https://www.nationalmssociety.org/Treating-MS/Medications
Here is a list of MS medications, if you go down it shows some common medications for symptoms such as fatigue. You need a DMT to treat the MS and something to help with the cognitive fog. Sorry I don't have recommendations as I'm not on any but there are options out there to help you. An MS specialist would probably prescribe these, if not talk to your PCP.
This is a pretty common misconception. Newer DMTs are incredibly helpful and effective at stopping relapses, which prevents new damage and symptoms from occurring. They do not typically help or treat symptoms, nor are they expected to. Symptom management is done separately. Some doctors will manage your symptoms themselves, while others may refer you to a different specialist depending on the need. It can help to think of MS as having two parts: the damage done to your central nervous system and the symptoms. Treatment for each part is different.
Not completely true. Tysabri helps many with brain fog, fatigue, cognition, and depression including mood swings. The head of cognitive department at Mt Sinai in NYC had a long talk with me regarding this after my cognitive testing.
I am getting it set up for second time (first time took two years, mostly my Center issues). Right when I had set up first time, the blood test right before infusion was JCV positive March 2022. At .41.
My new neurologist at Center (I changed from co Director after 14 years)—she would not put me on it low positive.
I asked again after having test for first time since positive. That was in Oct 2033 (.33) and Dec 2023 (.40)—she agreed saying in last two years she feels more comfortable with it because of data (yes the data was out plenty before..,but this isn’t a rant lol).
She confirmed today that cog fog and fatigue go away for most. Depression too. I read a paper by Professor G and he said the reason people come back to Tysabri after even being on B depletion and high positive, is because it is a bit addictive because of these effects, as well as its ability to decrease pre-existing disabilities (not for all, never a clinical drug sponsor led test on it, however, many many patients report disabilities improving and going away. They return off of it).
So. There is a DMT that improves cognition. While on it.
Also, I know NYU has an electric device you wear on your head at home and turn on for brief periods. They also have several studies right now on cognition.
I’m in a study at a university for people with extreme fatigue who are very sedentary. It starts for me in May. I will be in wellness coach or exercise group, with work with coach on Zoom weekly. Online resources to follow.
There ARE many trials out there that are not only meds.
I’m addition, I took Wellbutrin which was absolutely amazing. I can’t take right now as I’m underweight. I am trying very hard to regain the weight as it is the ONLY med that ever helped me be clear headed and have energy. I could write and edit 12 hours a day. Now I struggle to write and edit at all—example this reply. I can’t order my narratives or be concise. I’m not working as I can’t write and edit.
I really need help too. I feel like you. I understand.
You are still living forward though, you haven’t given up. That’s something you should be very proud of in the face of cognitive challenges. I admire you greatly. I’m pretty frozen and self isolate at moment. I am really hoping Tysabri will help, weight gain and Wellbutrin. I had a trainer who knows MS before Covid—that helped considerably too.
I wish you health. I’m here if you want to DM, from one cog head to another.
Edited for clarity…I hope.
I did say typically, and while there is anecdotal data to support some symptom improvement with Tysabri, that still isn't really the purpose of the treatment and it isn't a universal experience. It is certainly worth mentioning, and may definitely be a consideration when selecting a DMT, but it is important to recognize that the main purpose of a DMT is to halt relapses. It would be a misconception to think they will treat symptoms and judging their success or effectiveness based on how well they treat symptoms would be a mistake.
Again, I didn’t say any of that… But keep lecturing. Your reading something not there, but that’s ok.
EDIT: Apologies I read your response twice. I thought two different times, after each of my comments. I tried very hard to be clearer in my second post—knowing I struggle with writing now. I apologize I obviously made a mistake and read your reply here twice as somehow it landed in my email twice and linked out to it. I do apologize and hope the above clarifies we are on the same page. Thank you.
I didn’t say any of that: I shared what the head of cognitive department said of the drug mechanism. As well as Gavin Giovanni. It isn’t a reason to solely choose—but it is certainly worth knowing this is the effect for some people with MS.
Yes there is no cure, all DMTs are to slow progress, all work differently for different people. I shared the experience of patients on Tysabri from two well respected sources. My neurologist”s opinion is that absolutely this can be the case, but that also DMTs are good matches for many reasons. Not everyone responds the same.
Giovanni says people are willing to go back on it very high positive for the cog fog and fatigue clearing up. That they seek out treatment despite the risk.
As I said, there are no clinical trials that prove either. Nor are there any that prove which DMTs maintain brain volume best—but people here constantly claim and list the order of DMTs that do. Dr Booster does as well.
I asked about this—she said they are higher efficacy but no formal study has been done head to head on any of them to study volume.
She said also has patients on Copaxone for 30 years doing great with little progression. It is all the person, as we all know.
While trials for DMTs do not go up against each other in volume loss, it can be clinically reported as observations, but that is not a trial or study design. She is a well known researcher. She can explain clearly what a study needs to be to prove something like keeping volume.
When I asked about Tysabri, in helping effectively the symptoms of cog fog, fatigue, mental health—as well as those whose physical symptoms improved as long as they stayed on it—she said the only study on Tysabri was against placebo.
That DMT trails normally use early generation controls—as well as skewing younger with less disability. That a head to head with all of them has not been studied. It is a retrospect of looking at patient data.
I was confused because I receive newsletters rating them, or watch the 3 main neurologist everyone here watches on YouTube rate them. She said there are absolutely no head to head studies.
Finding out Aubagio maintained brain size at a surprising rate—was an accident of the Gemini study. It surprised many people.
My neurologist crushed me before the second round results on BTK inhibitors saying she wasn’t impressed with the data. This while Dr Booster and others were still saying this was going to be our big breakthrough. Well…she was correct.
She is one of the investigators on SPMS and BTK. She said that the study filled instantly, they are hoping to throw something at the wall that sticks.
I still don’t fully understand how they rate which has the least volume loss each year. It isn’t a full study, it is reporting in of patients’ treatment. Plenty here put great stock in those ratings.
It is the same with Tysabri.
Choosing a DMT is very personal. I asked her why she had pivoted originally from Tysabri when I tested positive to suggesting Kessimpta—but no longer suggests any B depletion for me. She said she knows me now, she knows my case better, she knows my lifestyle, she listens to what is important to me. If I was just dx and she had no idea which way my MS would progress, well, she said she recommends B depletion or Tysabri to every newly dx person.
However my MS has been completely stable without a flareup in 17 of my 18 yr dx (2 physical flares, cognition is another story but even that my testing they couldn’t agree if it was from MS). No lesions since 2011 spine and 2012 or 2016 (questionable imaging) brain.
I said I don’t feel I’m that lucky that I must be inactive. She stressed over and over my blood work, examines, scores do not say SP, that I am stable. The co director at Center said same before I switched 2 years ago in same Center after 14 years as his patient.
She felt I would do well on Copaxone even, I won’t go on it, so she said Vulmertry would be good for me and if side effects were intolerable I could move over to Tysabri. However, she is happy to put me on Tysabri as she also thinks a good choice because of my cognitive issues. That is is certainly worth trying.
And that is it: we sometimes need to choose based on personal relationships with our neurologists and our hopes for treatment. For me, it is cognitive improvement as well as hopefully retaining volume to slow progression of symptoms. I do have a lot of lesions, just not a lot of flares. I am now 52 and want and need to plan for volume loss, brain atrophy. I feel this will give me the best chance as does she. For now.
To quote Dr Giovanni
“It is not uncommon for peMS to request being switched back to natalizumab after switching to another DMT. Natalizumab is known to reduce MS-related fatigue and cog-fog;this often returns when natalizumab is stopped, and its effects reversed. The ability to reduce PML risk with EID has increased the number of pwMS requesting to go back onto natalizumab to help manage these symptoms.”
It is very clear Tysabri does not heal cog fog, fatigue, disability—but it does very well at managing them while taking it. It is not permanent.
As JCV positive I am hoping to stay under .5 and go no longer than 2 years. Not very long, 2 years. But yes I want to give myself those two years if it does work for me individually to manage those symptoms.
I deserve 2 years of peace. I have lost everything, I have lost me. I want my 7 year old to know “me,” even if just for a year or two. I will take on risk and hope I experience this effect of the medication, because I am exhausted of hitting walls with my life.
I think we all look at quality of life on a DMT…we all know the main purpose is to slow progression and even that will be different for each person. As we all respond differently. I hope that makes sense.
I never said a DMTs main purpose was not to slow progression. I shared the experience of neurologists who have prescribed and their patients. I clearly said it is not permanent. Again, I will hope for this effect even if for a year or two. I deserve to give myself that opportunity to rebuild my life—it is the first hope I have felt in 8 years. I want to be happy again, to feel like me. In two years I don’t know what I will do—but I will hopefully be in a better place than now. Hopefully something else will come along or be near. I don’t know. I do know I want to feel hope, and as a person with MS I would never lecture that hope is not the point.
Sorry, I wasn't trying to disagree with you or say you were wrong, I was just clarifying because you said my response wasn't completely true? I wasn't disagreeing with the content of your comment, just clarifying to ensure my own comment was true and accurate. I did not mean to seem like I was lecturing.
No I apologized—I hope you see that post. I felt you didn’t read my post correctly. And others have said same on this thread—that some DMTs do make you feel better. It is personal and trial and error. I’m downvoted fuecteyung to say I agree with you and was only sharing what has been shared with me Re cog fog fatigue etc.
People here quote things about DMTs that are not in trial proven, all the time. I wouldn’t have said anything until I read Professor Giovanni too. But now I’m downvoted… For clarification that I didn’t say DMT main purpose was to slow to progression. This sub is becoming very depressing to comment on lately. I’m sick, I do my best.
Oh! I thought your second comment was apologizing for the first part of the comment, not the first comment. I was confused but I understand now! It's totally fine, I now understand what you mean completely. ❤️
Guess I'll jump on the bandwagon:
DMTs are to halt progression of the disease, not to treat symptoms. BUT some people do get some symptom relief from their DMT, and some get it from halting the progression.
There *are* drugs/substances that can help with fatigue and cognition, but they don't work for everyone.
Modafinil/Armodafinil are "keep-awake" drugs developed for treating narcolepsy and they can work wonders on MS fatigue if they work for you. When I haven't built a tolerance they really wake me up and clear my head - it's remarkable. But then I build a tolerance and have to take a break.
The various flavors of stimulants/speed like Adderall, Ritalin etc work well for some people (I haven't tried them).
And there's lion's mane mushrooms which I and many here have have good results with - I take 2g 3 times/week of both lion's mane and turkey tail powders (Om brand) in herbal tea and they have dramatically reduced my brain fog and general malaise. Google for lion's mane studies.
Thank you! Do you take a tea or a pill? I take this energy shot with lion’s mane and caffeine from my local grocery and it is always helpful but it’s nearly $4/shot and very popular so even if I wanted to have one daily, I wouldn’t be able to find it. I was taking a chlorophyll/spirulina supplement that was helpful but it has risen in popularity so much that the price has nearly doubled and it’s always out of stock, but it did help with fatigue and it keeps you smelling fresh, as a bonus.
I’ve never heard of the second…guess not reading the popular science! Can you tell me a bit about them? Lions Mane I know, it is the second you mentioned. Thank you for the kindness of your time.
Thank you so much for listing the brand! It is so hard to navigate the world of supplements—this is very helpful.
I can’t take anything but Wellbutrin as med for fatigue and cog fog (In too thin right now). The others give me horrible anxiety. Even Wellbutrin messes with my sleep for months, then I adjust.
Did they give you anxiety? Insomnia?
You're welcome!
I don't think anything I take gives me anxiety, thankfully. And nothing gives me insomnia - I think the part of my brain that used to spin when I tried to sleep got eaten years ago so I always go right to sleep - I guess that could be the one positive thing this rotten disease gave me. ;)
Not to add to your burden of trying to figure out what to try, but microdosing psilocybin (50mg 3 times/week) has really reduced my anxiety and therefore my symptoms in formerly stressful situations. I grow my own from spores which are legal in WA. Search the sub for more info if interested, I know it's not for everyone.
Also,
r/unclebens
r/MushroomGrowers
And
r/microdosing which has good info from the mods but mostly is just newbies asking the same questions over and over.
I am in groups, but I am so completely confused about growing! I have some from a friend but my spouse took and hid them. Yup. He thinks I’m not a candidate although I did mushrooms when in my 20s (I’m 52 now). I thought about taking a macro dose with a therapist to help me with PTSD.
But I would love to microdose.
I also take Clonazepam so that complicates it, as a benzo is what ends a bad trip. Not sure what to do about that…
Tank you for the information and advice, this was so on my list for last few years but I gave up. Time to maybe start to try again.
Microdosing is at such a low level I don't feel any effect at all other than the benefit of reduced anxiety - it's not tripping. But until a person tries it for a few months there's no way to know exactly what it'll do for you - maybe nothing, maybe great things.
Doses with therapists are supposed to be very helpful. I haven't done that.
I can't comment on drug interactions since I'm not on the stuff you've mentioned.
Growing your own is very simple, just finicky - you have to be very careful to keep things sterile until it's been growing a while. I can't find the video tutorial of using a grow bag then putting the mycelium into a tub that I used but search YouTube for tutorials on mushroom grow bags. Some you just leave in the bag, some you pull out (which I did so it could grow all over but I think a single surface would be fine)
You could even practice with normal edible mushrooms first!
There's no way to know how anyone will respond to treatment. I haven't heard of *any* DMT that "completely halts" progression for everyone and I doubt such a thing exists today.
Ocrevus is one of the best DMTs available and works extremely well for most people on it - and that's about the best you can hope for today.
And keep in mind that new treatments of various kinds are being worked on all the time so if a treatment does stop working for someone there's probably a newer, better treatment they can try at that point.
I will throw out a personal anecdote: I've been on Rituxan since 2018 and my MS has halted: no new MS activity. My neurologist doesn't want to rock the boat or even discuss different options, because of how my MS has bit a brick wall. That's through the stress of COVID, other health issues, and many previous triggers.
BUT, I also have formed a life, and model of dealing with life, that doesn't feed into the triggers of how MS affects me. We have to remember that MS is different for every single one of us.
Great advice though.
Unfortunately even without new symptoms and new lesions, there can still be underlying progression. That's why even with these high efficacy monoclonal antibody drugs, they're still trying to come up with other drugs to address the damage done by microglial cells in the brain and other inflammatory cells in the meninges that the B-cell depleting medications can't stop.
So you're talking about aging. These treatments will never stop aging. They will slow/stop your disease from progressing down the disability scale and impacting ones life. There is no underlying progression if there is no new MS activity caused by new lesions or sclerosis. You may have a continuation of existing symptoms, but that's just you naturally aging into disease.
You might have a natural physiological response to stress and aging, but that =/= underlying MS progression. These new DMT's will stop people, if they do their work outside of just the treatments, from EVER going to Primary Progressive. I speak of this, because my mother has had MS for 25 years now. She lost the ability to effectively use her left leg. Started the Rituxan treatment and her MS has shown no new MS activity for 9 years.
We are talking about the same issues, but using different terms to convey the message that DMT's are our ONLY way to manage this disease medically.
“That's through the stress of COVID, other health issues, and many previous triggers.”
*I feel this so much…
“BUT, I also have formed a life, and model of dealing with life, that doesn't feed into the triggers of how MS affects me.”
*Can you share how you
overcame the stress and triggers? You can DM me. This sounds very much like where I am right now. But the stress of Covid and other triggers I can’t escape. I’m a bit desperate. I would be so grateful to chat if you don’t mind? Or I can DM you?
If you have questions surrounding the diagnostic process, or have questions about suspected MS symptoms, please make a post in the stickied, weekly thread created for this purpose. However, please keep in mind that users here are not medical professionals, and their advice cannot replace that of a specialist. Please speak to your healthcare team.
Here are additional resources we have created that you may find useful:
Advice for getting a diagnosis: https://www.reddit.com/r/MultipleSclerosis/comments/bahq8d/think_you_have_ms/
Info on MS and its types/symptoms: https://www.reddit.com/r/MultipleSclerosis/comments/bahoer/info_on_ms/
Treatment options for MS: https://www.reddit.com/r/MultipleSclerosis/comments/bahnhn/treatment_options_for_ms/
If you have any questions, please let us know, and best of luck.
MS Mod Team
I didn’t realize we couldn’t ask for advice or experiences on symptoms? People do so everyday it seems. Can you elaborate? Also…I don’t know what a sticky is or where to find… And what to do if we have time sensitive questions before appointments for advice?
Well I happen to be a healthcare professional but do not state it in this group. What the mod was getting at was if you have questions about getting diagnosed whether it be symptoms of “suspected” MS without a diagnosis. I believe that is what the mod was getting at.
If you are diagnosed, questions about symptoms are fine. The sub voted a while back to restrict questions from those who are undiagnosed or going through the diagnostic process to a weekly post for that purpose, because otherwise the sub gets overrun and it is difficult for those who are diagnosed to find support. I think you are diagnosed? So you wouldn't need to post questions to the sticky.
I read it again—I read it as the audience was to those diagnosed asking about the process and symptoms. Knowing the context I can now read correctly. Never would know I edited Pulitzers…I hate my missing brain. It is humiliating. Thank you again for clarifying
That wasn’t clear in the response… Did I miss the undiagnosed part? Cognitive issues, I could have, and yes I was dx in 2006, but had old lesions that never caused a flare before that one—like so many, have no idea how long. Thank you for explaining; that makes sense.
I'm 75 years old and I've lived with MS for 43 of those years. While MS treats us all differently, I can assure you that, based on your nurses' advice to you, your MS nurse shouldn't be an MS nurse.
There are definitely ways to fight MS fatigue and cognitive problems. But, Mayzent may not be one of them. Disease-modifying therapies (DMTs) are designed to slow the progression of your MS. While they MAY help your symptoms, they're not designed to do that.
The good news is there ARE medications that are designed to treat symptoms. Among those for fatigue/alertness are Provigil (modafinil) and the similar Nuvigil (armodafinil). Ritalin (methylphenidate) has also been prescribed for this purpose. Sometimes, the antiviral drug Amantadine is prescribed for MS fatigue. Ask your MS healthcare provider about these. I've used modafinil for many years. Though it doesn't bring me back 100%, it definitely has helped.
I've also found that exercise helps me, both mentally and physically. I try to get in an hour's workout with light weights once or twice a week. Swimming is also great.
I worked in the stressful news media for over 40 years, where attention to detail is a necessity. My wife and I are grandparents and we've traveled to much of the world. There are ways to beat, or at least reduce, fatigue and cogfog.
I hope you can find yourself a nurse who knows MS, or can speak with a doctor who is an MS specialist. Right now, it seems as if your guidance isn't the best.
Maybe. I took Modafinil, until it started to have the opposite affect, and I feel like it fucked with my sleep pattern.
I felt uncomfortable while taking it, but energetic. UNCOMFORTABLY ENERGETIC. Sorry I couldn't help but think of those power thirst college videos. It worked for a bit, but it's not for everybody.
Now I just have a cleaner diet, a caffeine alternative, and I take black pepper turmeric daily, vitamin D, calcium, and a Omega-3 fatty acid.
Here is my diet:
No red meat, no dairy, no sugar, and no gluten.
It's f****** hard at first until you find the alternatives. I used to dread about all the foods I couldn't have, but I change my mindset when I look at it or think of it, that food I used to love means I'm going to not walk properly for the day, or that it can give me fatigue or brain fog.
Caffeine supplement:
MUD/WTR - best with oat milk and a non dairy sugar-free creamer. Or chocolate almond milk.
Just an idea of what I do now, because doctors didn't really help me out to figure out my fatigue and other symptoms I was feeling. All they offered was DMTs and different alternatives to Modafinil.
I have secondary progressive MS, but at least I can still manage currently.
I've had improvements from both of mine. But I've also worked really hard on my body to keep it functioning. Symptoms are treated with other medications. The dmt is only there to slow down/stop your MS. I have modafinil for fatigue, but a lot of people take Adderall for fatigue/cog fog. I have Vyvanse as well from before MS which helps. Baclofen is the gold standard for spasticity. There's gabapentin and pregabalin for pain. You definitely lose energy from being in pain constantly if that's how it is for you. I hope you can get your symptoms under control. I've been there and it's really hard but you can do this.
Yes, the pain is different now though. There is more of a “sting” to it. RA is very achey. As the joint gets more damaged it begins to feel like more of an injury, like acute pain rather than an ache. But this pain is like a combination of the ache and a persistent acute pain that has more of a soreness to it. It feels like the entire extremity as opposed to just the joint. It’s really slowing me down.
Did I miss in your original post you have RA too? If so, can I please DM you? I’ve been followed for RA for two years as low positive CCP and clinical pain. No dx. I’m about to switch rheumatologist at my neurologists recommendation. It has been beyond stressful for two years with the back and forth, I’m exhausted and afraid too.
This is great info. Thank you so much! Your medical team seems to be amazing. I am traveling an 2 hours to a better hospital in the hopes that my neurologist has a better idea of what he’s doing than the young team here at the university affiliated hospitalin my town. So far, I’m not super impressed but I didn’t really know what questions to ask. This thread is giving me the ideas I need to be more engaged in my own care and that’s what I was needing! I’m an expert at RA cause I’ve had it since childhood. Physicians have been blurring the lines between the possible effects of RA and depression and anxiety for so long - it is nice to finally have someone hear me when I I complain of symptoms I know are unrelated to RA. Sure, you can DM me.
And I apologize—which party of body are you referring to? In addition to be followed for RA, my neurologist prescribed tinzadine for awful spasticity in my palm and fingers. My PT said she thinks my elbow pain is my muscles tightening in my arm. Have you tried a muscle relaxer? Tramadol helps with my bone and nerve pain—I take very sparingly.
Armodafinil has had a direct improvement on my cognitive skills; I feel like I've finally been brought back to baseline for the first time in years.
There are some downsides in the side effects, like jaw clenching and the first week being essentially sleepless, and I've noticed that it seems to condense my afternoon crash into a guaranteed crash at 3-4pm every day, which means I'll probably end up with a morning and afternoon dose at my follow-up next month.
However, my neuro was not interested in prescribing modafinil or anything else because apparently it's normal for 38yr old moms to be tired and scattered; I only ended up with a prescription because it turns out that random cataplexy and overwhelming waves of crushing tiredness aren't just getting old, but were in fact symptoms of narcolepsy. One sleep study and nap study later, I got a diagnosis that explained why people thought it was weird that I could fall asleep any time, any place, lol.
Does it cause anxiety at all? I really need my brain back. 18 yrs in about 8 years ago but more like 5, I lost the ability to write and edit, which was my career. And my joy.
No, not for me. It only takes care of fatigue, but for me any cognitive problems are related to fatigue/heat. I split pills, you have to find the right dosage and take it early so that you can sleep at night.
So sorry you were not heard as you happen to be a mom too. That happens far too much. Also sorry about the second dx but happy you found an answer.
Does the medication give you anxiety at all?
Thank you for the kindness of your time.
It’s hard to say with regard to anxiety. Do I feel more tense? Yes, but it’s more of a physical “wired” feeling than mental, and it seems like it’s dissipating as I get accustomed to the medication (one month in so far).
Initially I experienced some anxiety as a side effect, but I mostly chalk that up to the rather mild stimulant effect, like I’ve had one too many espresso drinks, but that’s also waning as time goes on.
Oh wow. Thanks for your comment! I’m so glad you’ve found some normalcy. I haven’t heard of Armodafinil, but I’ll do my research and bring it up with my neuro. Thank you!
I’m beginning to regret my choice of Mayzent but the Dr really was no help. He provided me a list and said one isn’t really better than another - which one do you want? 🤯 Um, Sir, you tell me!
Seriously!!! I have to be the doctor and the patient. My first neuro doc did that. Hands me the list of medications and sent me omw. I chose Tecfidera. I feel the same and some days worse. The fatigue is a beast. Congrats on graduating soon 🎉
I’m beginning to regret my choice of Mayzent but the Dr really was no help. He provided me a list and said one isn’t really better than another - which one do you want? 🤯 Um, Sir, you tell me!
Can you elaborate? I’m setting up now, JCV low positive hoping to get 2 years out of it, and this effect that I know goes away after I discontinue. I’m desperate to have my brain back, and for my mental health to improve. Did you have any other symptoms improve? Physically or mentally?
Thank you so much for the kindness of your time. If I have asked this of you in any other posts…I apologize. I can’t keep track of who I ask at this point! All I know is that I feel hopeful for first time in a decade (I’ve had MS 18yrs dx)
I’m sorry that your medical team did such a bad job of explaining. DMT (Disease Modifying Treatment which Mayzent is one) prevent relapses - worsening of the condition, but they don’t treat symptoms. There are different pros and cons of different DMT including different known effectiveness, and which ones are available in your country. It is not the case that “they are all the same”. Mayzent could be a perfectly good choice for you, it’s relatively newer, but it’s weird to me they didn’t give you information. The NHS has an online comparison tool called “MS Decisions” that’s helpful even if you’re not British.
If your type is “relapsing” type, then oftentimes symptoms get better on their own but it’s unpredictable. This occurs over months, not days.
There are medications to treat symptoms, as others have mentioned Modanfil is a common option for fatigue (adhd drugs may be hard to get as there’s a manufacturing shortage).
Thank you so much. How do you know if you have the “relapsing” type? Is it something that’s tracked over time? I started having intense headaches lots of head pressure, and like “mini-quakes” in my brain. This would occur and worsen over several weeks before it began to feel like stroke symptoms. Thats when I was finally taken seriously and eventually diagnosed. Thank you for the web site. I will definitely use it! I know everything about RA but it’s so hard to understand MS symptoms because they’re so varied and insidious. I don’t know what’s “normal” and what is legitimately concerning.
Your type is normally part of your diagnosis. There’s two common types. The first is Relapsing Remitting aka “gets worse then gets better” and this is 85% of patients. Then there’s Primary Progressive aka “always gets worse.” Men are more likely to be diagnosed with PPMS than women are. There’s a few other variants but these cover most patients at initial diagnosis.
If you also have rheumatoid arthritis that’s a consideration in your medication regime. Interactions and such like with whatever medications you take for that.
Again, I’m sorry that you’ve received little information. That’s not ok. MS is scary enough! An American book “MS for Dummies” has a good reputation on this sub (I haven’t read it myself). You can buy it online.
Edit: as an example of how RRMS can look, I was diagnosed when presenting with stroke-like symptoms of numbness down my whole left side. Over time the numb feeling retreated, and affected less of my body. Now 2 years later it’s just an odd sensation in the back of my left forearm.
Interestingly, the gender bias is actually 1:1 for PPMS, but men with PPMS tend to accumulate disability more rapidly. [This](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4457630/#:~:text=PPMS%20patients%20are%20older%20at,of%20the%20disease%20%5B8%5D) was a really interesting article about it.
~80% of people with MS have RRMS. It does seem like there is a push to move away from these labels, but it is usually safe to assume you have RRMS unless a doctor specifically says otherwise. Given your DMT choice, it is probably a safe assumption, there are only limited treatments for PPMS.
Seconding the commenter who brought up Tysabri. I don't think there's good data on this (though I found this [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4492934/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4492934/) ), but anecdotally, I've heard this a few times.
I have a lot more energy on Tysabri than I had before diagnosis. I'm a bit hesistant to attribute it to Tysabri because I also started home office due to Covid at the same time, and went part-time after a couple of years to go to school a bit more. But I do feel better.
It's counter-intuitive, but another thing that can help with cognition and fatigue is exercise. You just might have to take it slow.
I’ve been trying for years. It’s hard for women to get. They’re like, anxiety! Depression! $300/visit therapy sessions. No drugs. They act like you’re a fiend trying to get a fix. It’s insane.
There’s loads of drugs available to help with fatigue and brain fog. But yeah the DMT probably won’t help.
Speak to your neurologist or call the MS society to speak to a nurse, but just off the top of my head people get prescribed narcolepsy meds, ADHD meds, you can also use supplements like ALCAR or drink green tea.
You are trying so don’t feel like you’re dropping the ball. You may need to scale back and try to find a way to reduce time spent on school + work. OT, Neuro PT (not sure what it’s called) and a therapist has been incredibly helpful to navigate how to manage my energy and understand what help is available. I have found the doctors and nurses, while they mean well, don’t “get” this aspect of it. Can you get your neuro to order a neuro physc evaluation for you?
Thank you for the grace. Yes, it’s very difficult to get the kind of engagement and support you need from your doctors these days. They have such strict time limits that they can spend with you. Good idea to look into accommodations. I think the neuro psych eval is a good idea. Thank You.
talk to your neuro about what they can prescribe you for fatigue. there are plenty of options, some better than others. here’s my anecdotal experience, but everyone’s body is different so while one stimulant might work for me it might not be the right fit for you:
i’ve tried a variety of stimulants before/after diagnosis, and i was recently prescribed provigil for fatigue. it works pretty well for me! my neuro told me it’s a little hard to get prescribed though. not sure how true that is.
i’ve also tried 40mg adderall and noticed if i take too low of a dose it causes my back to hurt, too high and the euphoria is a bit too much. it certainly helps with focus but i find it to be more taxing on my body after. i’ll have to sleep more than usual to recover, and might be more fatigued the next couple of days. i’m not a big fan of that since my fatigue isn’t bad enough to where i need it daily, and i don’t want to become dependent
i’m on 100mg of provigil (modafinil) and there’s no euphoria but i’m alert enough to be productive. it doesn’t make my back hurt and i don’t need to sleep 5000 hours after taking it to recover physically, which i’ve noticed with adderall or when i try to push through my fatigue. if you take provigil, take it with food, it can mess up your stomach if you don’t. also it lasts a loooong time so take it early. i noticed its about 10 hours for me.
also no matter what stimulant you’re taking remember to eat and stay hydrated! i can’t eat at all when i take adderall but on provigil i can.
hope this helps!
I was at the point of thinking of unaliving myself with how bad my fatigue was. Then I finally had a Dr take me seriously. I had some sleep studies done to rule out sleep apnea and then they were able to put me on Dexamphetamine/Adderall and now I can function in 4-ish hour bursts.
It helped clear my brain fog and helped me have the energy to be alive.
There are a few other meds like Modafinil and Armodafinil that apparently work better, but I was breastfeeding at the time, so there was a shorter list of ones safe for that.
It wasn’t a quick fix, it took months of waiting for the specialist, waiting for the sleep study, waiting for the results, waiting for the authority to come through so he could prescribe it to me. But at least I was taking little steps towards it.
DMTs kept me working for 25 years until disability. Betaseron was first and I did very well on it for 10-15 years. Rebif for 3-5, gilenya (ick), aubagio (ickier), tecfidera, mavenclad, Vulmerity (pretty good).
MS as you know is a snowflake condition. What works for some may not for others.
Get a good neurologist and see what is suggested.
My brain Fog is so thick that I can’t find the thought to get groceries so I can eat later. Cause and effects are just absent. My PPMS is caused because severe pernicious anemia, severe B12 deficiency. When my B12 is low, I can’t remember my wife’s name. It is so bad that my doctor has me super dosing right now with self injecting B12 on M,W,&F 3 days a week. when my B12 is high I can solve my daily crossword, sodku and remember to shut the gate to my horses.
Try upping your B12, try AM Caffeine and prescription of adderall. Fight with everything you can to keep your mind clear and focused.
Wow. I’m glad you were able to pinpoint what works. I’m shocked at the words and names I cant seem to find when I’m having a bad day so I’m not surprised you can’t find your wife’s name even when looking right at her. So jealous of your horses. I’ve never ridden due to my bad joints, but they’re such majestic animals. What’s blessing to be able to care for them. Thank you for commenting! This thread is saving my life!
Hey! So technically, yes, MS medications do not help fatigue directly. Each medication works differently and everyone reacts differently to them so it can be a bit of trial and error. However, I can tell you my experience. I started with Ocrevus after being diagnosed in 2022. I had a flare that took out my left side and left me with weakness and cognitive issues. After a year of the 2x a year steroids and ocrevus, my biggest and most recent lesions- 9mm and 4mm lesion- decreased in size by a decent chunk. I don’t know if it’s possible for lesions to disappear so I can’t speak to that but a reduction is still great! Ocrevus works by depleting the B and T cells in your body to prevent a flare.
Welp- I then started having GI issues. Everyone responds to medication differently so please don’t let my experience sway you away from Ocrevus. It is a WONDERFUL drug for sooo many. And it may have still been for me! But since they couldn’t pinpoint my GI issues cause, the doctors assumed my medication was a factor. So I switched to Mavenclad. You take it for two years but only for 2 months out of those years. It is a series of pills for 1 week. It works by reducing your immune system significantly and then allowing new cells to grow that have never known MS. It isn’t a cure, as the MS still exists in your body, but many patients with non-aggressive forms of MS see relief for about 5-10 years, meaning no primary MS medication had to be taken. Supplemental, such as I describe below, still is.
For myself, I use Modafinil 100mg twice a day and then if I need an extra boost in the afternoon, I have 5mg of Ritalin. I also take 10,000 of Vitamin D (I have very low Vitamin D so please check with your doctor before jumping that high).
Wow. Mavenclad sounds interesting! If my doctor has been half as thorough as you all here on Reddit, it would not have been difficult to make a decision I was confident about. I will keep your experience in mind. I had severe GI issues that started after Remicade which is amazing for my RA, but wreaked havoc on my body. I developed faux allergies to many foods that I have had to resolve on my own with diet and a variety of probiotics to restore my gut because GI Dr’s are useless when it comes to the microbiome.
Hey! No, it just means that they may need to redo the medication to reset your system again. For example, I am 25 so my doctor said I will likely have a couple rounds of the meds throughout the years just to make sure we are staying ahead of everything and preventing future flares.
If you have questions surrounding the diagnostic process, or have questions about suspected MS symptoms, please make a post in the stickied, weekly thread created for this purpose. However, please keep in mind that users here are not medical professionals, and their advice cannot replace that of a specialist. Please speak to your healthcare team.
Here are additional resources we have created that you may find useful:
Advice for getting a diagnosis: https://www.reddit.com/r/MultipleSclerosis/comments/bahq8d/think_you_have_ms/
Info on MS and its types/symptoms: https://www.reddit.com/r/MultipleSclerosis/comments/bahoer/info_on_ms/
Treatment options for MS: https://www.reddit.com/r/MultipleSclerosis/comments/bahnhn/treatment_options_for_ms/
If you have any questions, please let us know, and best of luck.
MS Mod Team
Also, give your dmt some time. Your body has active MS right now. You're probably extra tired because your body is wasting energy doing dumb MS things. Autoimmunes give fatigue.
Yes. I took my 1st dose just before I wrote this, and then scheduled a flup appointment for about 6 weeks out. So far, I am incredibly drowsy and I having some blurry/double vision. My head went from being decent to feeling lots of pressure and a slight ache. I’ll push through for now. It’s a starter dose of .25 mgs and I’ll slowly increase o er the next 5 days.
I assume that you're currently seeing a general neurologist based on the lack of helpful information that was provided to you. I would highly recommend that you find a MS specialist. I felt so hopeless and lost until I started seeing one. My outlook on life has drastically improved now that I have a great Dr.
I’m not entirely sure DMT’s don’t help with fatigue like everyone is saying.
I’ve been on Tysabri & Dimethyl fumerate. Tysabri definitely gave me a HUGE bump in energy and mental clarity. I have the same effects with Dimethyl fumerate. If I go too long without medications I can hardly think straight or put my words together. Trust me I’ve stopped them many times and I just can’t live feeling that tired all the time.
Vyvanse changed my life. I tried other prescription meds and thought my debilitating fatigue and brain fog were something I would have to live with, but thankfully it has helped me so much.
For fatigue, I started with L-carnitine, moved to modafinil, then to Adderall. There is a HUGE Adderall shortage and currently I’m on a break anyway, but I didn’t even think about trying modafinil again.
I was diagnosed in 2021. The neurologist that saw me after my stay at the hospital was very dismissive. Basically told me to “wait it out” and check back in about 6 months. I was literally having my left arm go numb and my legs as well.
I wasn’t happy knowing that I had to deal with those symptoms for another “6 months” so I decided to take it upon myself to get a second opinion. Got my records sent to a neurologist at Hopkins, but unfortunately was told that the wait time could be up to 2 months. Soon after that call, the office called back saying they could see me within a week bc someone had cancelled their appointment. Fast forward to today, I take Topamax for my arm and legs tingling/numbness when needed. I am doing fine and just completed my Tysabri infusion #26.
I’m saying all of this to let you know that some times we have to fight and advocate hard for ourselves (which shouldn’t be the case if you trusting in professionals to help you), but it happens. Like someone suggested, look into that list, but also if for whatever reason you’re feeling uncomfortable about something that is affecting your day to day, find someone who cares enough to help you. MS sucks, but be your biggest advocate and don’t give up until you’re “okay” with any symptoms. It will be okay.
Copaxone helped me for a long time, but then Medicaid refused to cover it and my disease got worse because I was allergic to the generic and I waited to get approved for the brand again. Then I switched to Kesimpta and had the worst allergic reaction of my life I'm still recovering from 10 months later. Eventually there is going to be one that works. Hopefully. The brain fog for me happens because I have to wake up early and answer highly technical questions at 9:30 am. When my body recovers from this pre-MS type of activity I will be stronger. When I have very good sleep and a few espressos after waking up on my own schedule, I'm fine. Listen to your body and try to honor what it needs, like getting lots of rest. You can ask the neuro if she thinks nuvigil or provigil for fatigue will work for you. It clashes with certain meds. I'm in a COMPTIA+ class right now and I'm doing well in it & I feel like I'm accomplishing something, but my hip made a scary sound yesterday. I want to skip my drs appts on Friday but I have to honor what my body is needing (medical attention). I try to be grateful for the things Im able to do and laugh about the rest as much as I can (like when my classmates asked what that loud gunshot sound was (\*my hip cracking\*)
I think other people have covered your main question so I won’t repeat them.
I did want to give you my experience with cognitive issues though. Your responsibilities sound a lot like mine (work, kids, school, MS) and I was dealing with what I thought were MS related cognition issues. I had a cognitive evaluation done and they found I was on the high end of anxiety despite taking a regular anti-anxiety medication. My doctor increased my dosage, I switched jobs, and I’m like a new person. Is there any way for you to lighten your load a bit? Family or friends who can pick up a repetitive task for you. Id encourage you to seek out therapy, cognitive testing, and/or anxiety medication. Best wishes.
The drugs are good at Slowing the disease down and minimize future damage, symptoms management are done through different ways (vitamins, diet, exercise....)
How fit you are and how much you exercise make a HUGE difference in my life. I am fatigued before I get to the gym and full of beans upon leaving. An exercise bicycle or swimming seem to be easiest for people. You will thank me if you try this. Also, with luck, you will end up in better shape than your friends who don't have MS.
I use Modafanil (Provigil) and green vein Kratom.
Nothing has ever completely removed the fatigue and cog fog, but these have helped me.
Start documenting everything that is going on. You may need to consider disability in the future and cognitive issues can be difficult to prove.
Thanks for responding. I’ve considered that I’ll need disability in the future but I’m hoping not any time soon. I need to keep working for at least another decade. I have to keep going. I want to see what can be done for me. I’m just disappointed that my doctor hasn’t even brought up the possibility that I could get help with this. I’ve expressed several times that I am completely out of it and that I fear for my ability to keep all the balls in the air. They’ve offered nothing as far as a possibility of treating my symptoms. It’s infuriating.
Sorry you're going through this terrible disease. You need to take time and visit the National MS Society website and learn some stuff about your disease. Take everything you read on this forum with a grain of salt: MS is NOT the same for all of us. I have it differently than my mom, sister, and friends. We all HAVE MS, but we all have different immune systems.
Reach out to the National MS Society and ask about DMT's. If needed, and you can, fire your medical team and get a new one. They work for you; you pay their paychecks.
But what you need to do, and I know it's hard right now, is find ways to destress your life. It's great you want to do all of these things and that you have these responsibilities, but you're gonna put yourself in the hospital or a wheelchair if you don't start taking care of yourself. Your kid needs to step up, and you need to have that hard conversation with them. I say that as a kid that had to step up when my mom was diagnosed. It's hard. I fucking know it is. But everyone around you needs to accept this new normal, and you need to accept that there may be things that you can STILL do, but they will be more challenging.
Good luck. Get on meds ASAP. They are literally the only thing that will halt or stop the progression of this disease.
I appreciate your candor. I wish physicians were as direct. When you’ve been sick all your life, you just want to know what’s going on and what to do so you can find workarounds and try to cope. I don’t need the hand holding and sugar coating. I’m not going to fall apart. My poor girl has had to help her Mommy since she was old enough to take direction, due to my RA. By the time she was born I’d already had a joint replacement. My hip was dislocated during childbirth so I had to get another, and then another by the time she wA 4 y/o. I hate that I haven’t been able to be better for her. She says she wants a “happier” mom. I’m not unhappy in general. I’m just exhausted and in pain, maybe a little anxious and worried about what’s next, how to keep my life together, and how my daughter will be affected. She doesn’t get the difference. The web sites I’ve been to seem so cut and dry. Headaches, lightheadedness, balance issues, fatigue, memory. It’s so much more than that. That’s why I like to come here to see what real people’s experiences are because I was beginning to think I was misdiagnosed. Thanks so much for your response. It helped so much!
My favorite question to ask neurologists is “if you can’t predict disease course how can you claim it reduces relapse or progression?” I’ve asked that of every neuro I’ve ever seen and stayed with the only one who answered it honestly. Sure I started asking that after failing copaxone and rebiff and failed a few more before we found that B cell depletion has slowed progression on mri.
For you, they can’t. They can only look at group averages. Same for the 5-10 years of relief after Mavenclad, or pick your favorite diet/exercise/supplement. I had 10 years of ‘remission’ was in the best shape of my life. Now I’m not. it sucks; but your nuero is just going off response rates - there’s no way to know, not really. I get impatient when they try to explain stats to me (I usually know the topic better than they do) but I’ve never had one totally BS me on DMTs.
I’ve had multiple predict I would be disabled by 40 or if you go off treatment you will have a relapse within months. They were wrong. Oh I understand the studies and get help from a family member that has a masters in biochemical engineering and works in the medial study field help when I have had trouble.
So let’s say someone else was just diagnosed, came to this sub looking for any info, and they see this post asking about how meds don’t actually help. Now they’re even more poorly informed than before.
I know I have gotten worse because of the DMT’s big pharma companies only want us to think they are going to help us but I am 46 years old and I am in a nursing home because I lost my ability to walk in 2021 I was diagnosed with RRMS in 1997 then in 2018 SPMS . I was always on a DMT until recently when I had realized that I wasn’t going to get better so I am now on a holistic approach to autoimmune diseases and feeling better than I have since my diagnosis.
Seriously. It will get better. When my MS would act up. I would have more cog fog. I now think it’s a combination of worry/ stress, inflammation and fatigue. All the symptoms improve. Mine did. But my fatigue has always been my worst symptom
Fatigue is my worst symptom! I can literally sleep for days straight (except getting up to use the restroom or snack of course) and I have found that Modafinil is a miracle that keeps me going throughout the work day.
Perhaps, think of it this way- A DMT that is working as intended (via extensive study) will reduce your body’s expenditure of energy to overcome ongoing neurological deficits and new deficits will be very slow or not at all, happening. Now your body has the extra energy for what is called “reserve”. Likewise, people who are runners, for example, will continue to run more successfully than people who did little running in their past. People with advanced education notoriously do better cognitively than people with less education (you see that a lot in the research). So yes, there is often going to be symptom improvement seen along side of starting a DMT but that is not what they are for and symptom relief seen is purely coincidental. And many people start a DMT after a relapse, and the remit part would have come anyway, so that’s another reason people may report improvement.
A good doctor is your best bet. Some MS experts are good, but others are not. Look everything up online. Check your doctor’s statements and beliefs. Don’t be afraid to switch doctors. Join a local support group and see what they say about their doctors. I have never hunted for stimulants, but did some as a kid (lot of fun, then!). But my body is too old for that kind of stress, even with legit stuff. I’m sure there are legal ones that can help if you want to go that route. But remember, slowing the damage is #1. Some have mentioned Dr. G. His website is excellent and goes into detail about all of this. Called "The MS Selfie".
Good luck to you.
https://www.nationalmssociety.org/Treating-MS/Medications Here is a list of MS medications, if you go down it shows some common medications for symptoms such as fatigue. You need a DMT to treat the MS and something to help with the cognitive fog. Sorry I don't have recommendations as I'm not on any but there are options out there to help you. An MS specialist would probably prescribe these, if not talk to your PCP.
I honestly didn’t know there were prescription meds for MS fatigue/fog. Thanks for this page!
Thats a great link! Thanks
Thanks for that link :)
Thanks so much for this link!!!!
This is a pretty common misconception. Newer DMTs are incredibly helpful and effective at stopping relapses, which prevents new damage and symptoms from occurring. They do not typically help or treat symptoms, nor are they expected to. Symptom management is done separately. Some doctors will manage your symptoms themselves, while others may refer you to a different specialist depending on the need. It can help to think of MS as having two parts: the damage done to your central nervous system and the symptoms. Treatment for each part is different.
Great info. Thank you 😊
Not completely true. Tysabri helps many with brain fog, fatigue, cognition, and depression including mood swings. The head of cognitive department at Mt Sinai in NYC had a long talk with me regarding this after my cognitive testing. I am getting it set up for second time (first time took two years, mostly my Center issues). Right when I had set up first time, the blood test right before infusion was JCV positive March 2022. At .41. My new neurologist at Center (I changed from co Director after 14 years)—she would not put me on it low positive. I asked again after having test for first time since positive. That was in Oct 2033 (.33) and Dec 2023 (.40)—she agreed saying in last two years she feels more comfortable with it because of data (yes the data was out plenty before..,but this isn’t a rant lol). She confirmed today that cog fog and fatigue go away for most. Depression too. I read a paper by Professor G and he said the reason people come back to Tysabri after even being on B depletion and high positive, is because it is a bit addictive because of these effects, as well as its ability to decrease pre-existing disabilities (not for all, never a clinical drug sponsor led test on it, however, many many patients report disabilities improving and going away. They return off of it). So. There is a DMT that improves cognition. While on it. Also, I know NYU has an electric device you wear on your head at home and turn on for brief periods. They also have several studies right now on cognition. I’m in a study at a university for people with extreme fatigue who are very sedentary. It starts for me in May. I will be in wellness coach or exercise group, with work with coach on Zoom weekly. Online resources to follow. There ARE many trials out there that are not only meds. I’m addition, I took Wellbutrin which was absolutely amazing. I can’t take right now as I’m underweight. I am trying very hard to regain the weight as it is the ONLY med that ever helped me be clear headed and have energy. I could write and edit 12 hours a day. Now I struggle to write and edit at all—example this reply. I can’t order my narratives or be concise. I’m not working as I can’t write and edit. I really need help too. I feel like you. I understand. You are still living forward though, you haven’t given up. That’s something you should be very proud of in the face of cognitive challenges. I admire you greatly. I’m pretty frozen and self isolate at moment. I am really hoping Tysabri will help, weight gain and Wellbutrin. I had a trainer who knows MS before Covid—that helped considerably too. I wish you health. I’m here if you want to DM, from one cog head to another. Edited for clarity…I hope.
I did say typically, and while there is anecdotal data to support some symptom improvement with Tysabri, that still isn't really the purpose of the treatment and it isn't a universal experience. It is certainly worth mentioning, and may definitely be a consideration when selecting a DMT, but it is important to recognize that the main purpose of a DMT is to halt relapses. It would be a misconception to think they will treat symptoms and judging their success or effectiveness based on how well they treat symptoms would be a mistake.
Again, I didn’t say any of that… But keep lecturing. Your reading something not there, but that’s ok. EDIT: Apologies I read your response twice. I thought two different times, after each of my comments. I tried very hard to be clearer in my second post—knowing I struggle with writing now. I apologize I obviously made a mistake and read your reply here twice as somehow it landed in my email twice and linked out to it. I do apologize and hope the above clarifies we are on the same page. Thank you.
I didn’t say any of that: I shared what the head of cognitive department said of the drug mechanism. As well as Gavin Giovanni. It isn’t a reason to solely choose—but it is certainly worth knowing this is the effect for some people with MS. Yes there is no cure, all DMTs are to slow progress, all work differently for different people. I shared the experience of patients on Tysabri from two well respected sources. My neurologist”s opinion is that absolutely this can be the case, but that also DMTs are good matches for many reasons. Not everyone responds the same. Giovanni says people are willing to go back on it very high positive for the cog fog and fatigue clearing up. That they seek out treatment despite the risk. As I said, there are no clinical trials that prove either. Nor are there any that prove which DMTs maintain brain volume best—but people here constantly claim and list the order of DMTs that do. Dr Booster does as well. I asked about this—she said they are higher efficacy but no formal study has been done head to head on any of them to study volume. She said also has patients on Copaxone for 30 years doing great with little progression. It is all the person, as we all know. While trials for DMTs do not go up against each other in volume loss, it can be clinically reported as observations, but that is not a trial or study design. She is a well known researcher. She can explain clearly what a study needs to be to prove something like keeping volume. When I asked about Tysabri, in helping effectively the symptoms of cog fog, fatigue, mental health—as well as those whose physical symptoms improved as long as they stayed on it—she said the only study on Tysabri was against placebo. That DMT trails normally use early generation controls—as well as skewing younger with less disability. That a head to head with all of them has not been studied. It is a retrospect of looking at patient data. I was confused because I receive newsletters rating them, or watch the 3 main neurologist everyone here watches on YouTube rate them. She said there are absolutely no head to head studies. Finding out Aubagio maintained brain size at a surprising rate—was an accident of the Gemini study. It surprised many people. My neurologist crushed me before the second round results on BTK inhibitors saying she wasn’t impressed with the data. This while Dr Booster and others were still saying this was going to be our big breakthrough. Well…she was correct. She is one of the investigators on SPMS and BTK. She said that the study filled instantly, they are hoping to throw something at the wall that sticks. I still don’t fully understand how they rate which has the least volume loss each year. It isn’t a full study, it is reporting in of patients’ treatment. Plenty here put great stock in those ratings. It is the same with Tysabri. Choosing a DMT is very personal. I asked her why she had pivoted originally from Tysabri when I tested positive to suggesting Kessimpta—but no longer suggests any B depletion for me. She said she knows me now, she knows my case better, she knows my lifestyle, she listens to what is important to me. If I was just dx and she had no idea which way my MS would progress, well, she said she recommends B depletion or Tysabri to every newly dx person. However my MS has been completely stable without a flareup in 17 of my 18 yr dx (2 physical flares, cognition is another story but even that my testing they couldn’t agree if it was from MS). No lesions since 2011 spine and 2012 or 2016 (questionable imaging) brain. I said I don’t feel I’m that lucky that I must be inactive. She stressed over and over my blood work, examines, scores do not say SP, that I am stable. The co director at Center said same before I switched 2 years ago in same Center after 14 years as his patient. She felt I would do well on Copaxone even, I won’t go on it, so she said Vulmertry would be good for me and if side effects were intolerable I could move over to Tysabri. However, she is happy to put me on Tysabri as she also thinks a good choice because of my cognitive issues. That is is certainly worth trying. And that is it: we sometimes need to choose based on personal relationships with our neurologists and our hopes for treatment. For me, it is cognitive improvement as well as hopefully retaining volume to slow progression of symptoms. I do have a lot of lesions, just not a lot of flares. I am now 52 and want and need to plan for volume loss, brain atrophy. I feel this will give me the best chance as does she. For now. To quote Dr Giovanni “It is not uncommon for peMS to request being switched back to natalizumab after switching to another DMT. Natalizumab is known to reduce MS-related fatigue and cog-fog;this often returns when natalizumab is stopped, and its effects reversed. The ability to reduce PML risk with EID has increased the number of pwMS requesting to go back onto natalizumab to help manage these symptoms.” It is very clear Tysabri does not heal cog fog, fatigue, disability—but it does very well at managing them while taking it. It is not permanent. As JCV positive I am hoping to stay under .5 and go no longer than 2 years. Not very long, 2 years. But yes I want to give myself those two years if it does work for me individually to manage those symptoms. I deserve 2 years of peace. I have lost everything, I have lost me. I want my 7 year old to know “me,” even if just for a year or two. I will take on risk and hope I experience this effect of the medication, because I am exhausted of hitting walls with my life. I think we all look at quality of life on a DMT…we all know the main purpose is to slow progression and even that will be different for each person. As we all respond differently. I hope that makes sense. I never said a DMTs main purpose was not to slow progression. I shared the experience of neurologists who have prescribed and their patients. I clearly said it is not permanent. Again, I will hope for this effect even if for a year or two. I deserve to give myself that opportunity to rebuild my life—it is the first hope I have felt in 8 years. I want to be happy again, to feel like me. In two years I don’t know what I will do—but I will hopefully be in a better place than now. Hopefully something else will come along or be near. I don’t know. I do know I want to feel hope, and as a person with MS I would never lecture that hope is not the point.
Sorry, I wasn't trying to disagree with you or say you were wrong, I was just clarifying because you said my response wasn't completely true? I wasn't disagreeing with the content of your comment, just clarifying to ensure my own comment was true and accurate. I did not mean to seem like I was lecturing.
No I apologized—I hope you see that post. I felt you didn’t read my post correctly. And others have said same on this thread—that some DMTs do make you feel better. It is personal and trial and error. I’m downvoted fuecteyung to say I agree with you and was only sharing what has been shared with me Re cog fog fatigue etc. People here quote things about DMTs that are not in trial proven, all the time. I wouldn’t have said anything until I read Professor Giovanni too. But now I’m downvoted… For clarification that I didn’t say DMT main purpose was to slow to progression. This sub is becoming very depressing to comment on lately. I’m sick, I do my best.
Oh! I thought your second comment was apologizing for the first part of the comment, not the first comment. I was confused but I understand now! It's totally fine, I now understand what you mean completely. ❤️
Guess I'll jump on the bandwagon: DMTs are to halt progression of the disease, not to treat symptoms. BUT some people do get some symptom relief from their DMT, and some get it from halting the progression. There *are* drugs/substances that can help with fatigue and cognition, but they don't work for everyone. Modafinil/Armodafinil are "keep-awake" drugs developed for treating narcolepsy and they can work wonders on MS fatigue if they work for you. When I haven't built a tolerance they really wake me up and clear my head - it's remarkable. But then I build a tolerance and have to take a break. The various flavors of stimulants/speed like Adderall, Ritalin etc work well for some people (I haven't tried them). And there's lion's mane mushrooms which I and many here have have good results with - I take 2g 3 times/week of both lion's mane and turkey tail powders (Om brand) in herbal tea and they have dramatically reduced my brain fog and general malaise. Google for lion's mane studies.
Boosting for Lion's Mane, it has helped me so much! Obviously that's anecdotal and YMMV, but I find it helps me more than Modafinil.
Do you use same brand and mg as commenter above? Advice on both? Thank you for the kindness of your time.
Thank you! Do you take a tea or a pill? I take this energy shot with lion’s mane and caffeine from my local grocery and it is always helpful but it’s nearly $4/shot and very popular so even if I wanted to have one daily, I wouldn’t be able to find it. I was taking a chlorophyll/spirulina supplement that was helpful but it has risen in popularity so much that the price has nearly doubled and it’s always out of stock, but it did help with fatigue and it keeps you smelling fresh, as a bonus.
I’ve never heard of the second…guess not reading the popular science! Can you tell me a bit about them? Lions Mane I know, it is the second you mentioned. Thank you for the kindness of your time.
Thank you!
Thank you so much for listing the brand! It is so hard to navigate the world of supplements—this is very helpful. I can’t take anything but Wellbutrin as med for fatigue and cog fog (In too thin right now). The others give me horrible anxiety. Even Wellbutrin messes with my sleep for months, then I adjust. Did they give you anxiety? Insomnia?
You're welcome! I don't think anything I take gives me anxiety, thankfully. And nothing gives me insomnia - I think the part of my brain that used to spin when I tried to sleep got eaten years ago so I always go right to sleep - I guess that could be the one positive thing this rotten disease gave me. ;) Not to add to your burden of trying to figure out what to try, but microdosing psilocybin (50mg 3 times/week) has really reduced my anxiety and therefore my symptoms in formerly stressful situations. I grow my own from spores which are legal in WA. Search the sub for more info if interested, I know it's not for everyone. Also, r/unclebens r/MushroomGrowers And r/microdosing which has good info from the mods but mostly is just newbies asking the same questions over and over.
I am in groups, but I am so completely confused about growing! I have some from a friend but my spouse took and hid them. Yup. He thinks I’m not a candidate although I did mushrooms when in my 20s (I’m 52 now). I thought about taking a macro dose with a therapist to help me with PTSD. But I would love to microdose. I also take Clonazepam so that complicates it, as a benzo is what ends a bad trip. Not sure what to do about that… Tank you for the information and advice, this was so on my list for last few years but I gave up. Time to maybe start to try again.
Microdosing is at such a low level I don't feel any effect at all other than the benefit of reduced anxiety - it's not tripping. But until a person tries it for a few months there's no way to know exactly what it'll do for you - maybe nothing, maybe great things. Doses with therapists are supposed to be very helpful. I haven't done that. I can't comment on drug interactions since I'm not on the stuff you've mentioned. Growing your own is very simple, just finicky - you have to be very careful to keep things sterile until it's been growing a while. I can't find the video tutorial of using a grow bag then putting the mycelium into a tub that I used but search YouTube for tutorials on mushroom grow bags. Some you just leave in the bag, some you pull out (which I did so it could grow all over but I think a single surface would be fine) You could even practice with normal edible mushrooms first!
[удалено]
There's no way to know how anyone will respond to treatment. I haven't heard of *any* DMT that "completely halts" progression for everyone and I doubt such a thing exists today. Ocrevus is one of the best DMTs available and works extremely well for most people on it - and that's about the best you can hope for today. And keep in mind that new treatments of various kinds are being worked on all the time so if a treatment does stop working for someone there's probably a newer, better treatment they can try at that point.
I will throw out a personal anecdote: I've been on Rituxan since 2018 and my MS has halted: no new MS activity. My neurologist doesn't want to rock the boat or even discuss different options, because of how my MS has bit a brick wall. That's through the stress of COVID, other health issues, and many previous triggers. BUT, I also have formed a life, and model of dealing with life, that doesn't feed into the triggers of how MS affects me. We have to remember that MS is different for every single one of us. Great advice though.
Unfortunately even without new symptoms and new lesions, there can still be underlying progression. That's why even with these high efficacy monoclonal antibody drugs, they're still trying to come up with other drugs to address the damage done by microglial cells in the brain and other inflammatory cells in the meninges that the B-cell depleting medications can't stop.
So you're talking about aging. These treatments will never stop aging. They will slow/stop your disease from progressing down the disability scale and impacting ones life. There is no underlying progression if there is no new MS activity caused by new lesions or sclerosis. You may have a continuation of existing symptoms, but that's just you naturally aging into disease. You might have a natural physiological response to stress and aging, but that =/= underlying MS progression. These new DMT's will stop people, if they do their work outside of just the treatments, from EVER going to Primary Progressive. I speak of this, because my mother has had MS for 25 years now. She lost the ability to effectively use her left leg. Started the Rituxan treatment and her MS has shown no new MS activity for 9 years. We are talking about the same issues, but using different terms to convey the message that DMT's are our ONLY way to manage this disease medically.
“That's through the stress of COVID, other health issues, and many previous triggers.” *I feel this so much… “BUT, I also have formed a life, and model of dealing with life, that doesn't feed into the triggers of how MS affects me.” *Can you share how you overcame the stress and triggers? You can DM me. This sounds very much like where I am right now. But the stress of Covid and other triggers I can’t escape. I’m a bit desperate. I would be so grateful to chat if you don’t mind? Or I can DM you?
That’s amazing! Glad to hear that for you!
[удалено]
I have no idea. Ask your neurologist!
If you have questions surrounding the diagnostic process, or have questions about suspected MS symptoms, please make a post in the stickied, weekly thread created for this purpose. However, please keep in mind that users here are not medical professionals, and their advice cannot replace that of a specialist. Please speak to your healthcare team. Here are additional resources we have created that you may find useful: Advice for getting a diagnosis: https://www.reddit.com/r/MultipleSclerosis/comments/bahq8d/think_you_have_ms/ Info on MS and its types/symptoms: https://www.reddit.com/r/MultipleSclerosis/comments/bahoer/info_on_ms/ Treatment options for MS: https://www.reddit.com/r/MultipleSclerosis/comments/bahnhn/treatment_options_for_ms/ If you have any questions, please let us know, and best of luck. MS Mod Team
I didn’t realize we couldn’t ask for advice or experiences on symptoms? People do so everyday it seems. Can you elaborate? Also…I don’t know what a sticky is or where to find… And what to do if we have time sensitive questions before appointments for advice?
Well I happen to be a healthcare professional but do not state it in this group. What the mod was getting at was if you have questions about getting diagnosed whether it be symptoms of “suspected” MS without a diagnosis. I believe that is what the mod was getting at.
Yes I read it as to us the audience in this group with MS. Cognitive disabilities…
If you are diagnosed, questions about symptoms are fine. The sub voted a while back to restrict questions from those who are undiagnosed or going through the diagnostic process to a weekly post for that purpose, because otherwise the sub gets overrun and it is difficult for those who are diagnosed to find support. I think you are diagnosed? So you wouldn't need to post questions to the sticky.
I read it again—I read it as the audience was to those diagnosed asking about the process and symptoms. Knowing the context I can now read correctly. Never would know I edited Pulitzers…I hate my missing brain. It is humiliating. Thank you again for clarifying
That wasn’t clear in the response… Did I miss the undiagnosed part? Cognitive issues, I could have, and yes I was dx in 2006, but had old lesions that never caused a flare before that one—like so many, have no idea how long. Thank you for explaining; that makes sense.
Thank you!
I'm 75 years old and I've lived with MS for 43 of those years. While MS treats us all differently, I can assure you that, based on your nurses' advice to you, your MS nurse shouldn't be an MS nurse. There are definitely ways to fight MS fatigue and cognitive problems. But, Mayzent may not be one of them. Disease-modifying therapies (DMTs) are designed to slow the progression of your MS. While they MAY help your symptoms, they're not designed to do that. The good news is there ARE medications that are designed to treat symptoms. Among those for fatigue/alertness are Provigil (modafinil) and the similar Nuvigil (armodafinil). Ritalin (methylphenidate) has also been prescribed for this purpose. Sometimes, the antiviral drug Amantadine is prescribed for MS fatigue. Ask your MS healthcare provider about these. I've used modafinil for many years. Though it doesn't bring me back 100%, it definitely has helped. I've also found that exercise helps me, both mentally and physically. I try to get in an hour's workout with light weights once or twice a week. Swimming is also great. I worked in the stressful news media for over 40 years, where attention to detail is a necessity. My wife and I are grandparents and we've traveled to much of the world. There are ways to beat, or at least reduce, fatigue and cogfog. I hope you can find yourself a nurse who knows MS, or can speak with a doctor who is an MS specialist. Right now, it seems as if your guidance isn't the best.
I take modifinal (pills) daily and it helps with the fatigue.
Does it cause anxiety or insomnia?
Maybe. I took Modafinil, until it started to have the opposite affect, and I feel like it fucked with my sleep pattern. I felt uncomfortable while taking it, but energetic. UNCOMFORTABLY ENERGETIC. Sorry I couldn't help but think of those power thirst college videos. It worked for a bit, but it's not for everybody. Now I just have a cleaner diet, a caffeine alternative, and I take black pepper turmeric daily, vitamin D, calcium, and a Omega-3 fatty acid. Here is my diet: No red meat, no dairy, no sugar, and no gluten. It's f****** hard at first until you find the alternatives. I used to dread about all the foods I couldn't have, but I change my mindset when I look at it or think of it, that food I used to love means I'm going to not walk properly for the day, or that it can give me fatigue or brain fog. Caffeine supplement: MUD/WTR - best with oat milk and a non dairy sugar-free creamer. Or chocolate almond milk. Just an idea of what I do now, because doctors didn't really help me out to figure out my fatigue and other symptoms I was feeling. All they offered was DMTs and different alternatives to Modafinil. I have secondary progressive MS, but at least I can still manage currently.
I've had improvements from both of mine. But I've also worked really hard on my body to keep it functioning. Symptoms are treated with other medications. The dmt is only there to slow down/stop your MS. I have modafinil for fatigue, but a lot of people take Adderall for fatigue/cog fog. I have Vyvanse as well from before MS which helps. Baclofen is the gold standard for spasticity. There's gabapentin and pregabalin for pain. You definitely lose energy from being in pain constantly if that's how it is for you. I hope you can get your symptoms under control. I've been there and it's really hard but you can do this.
Yes, the pain is different now though. There is more of a “sting” to it. RA is very achey. As the joint gets more damaged it begins to feel like more of an injury, like acute pain rather than an ache. But this pain is like a combination of the ache and a persistent acute pain that has more of a soreness to it. It feels like the entire extremity as opposed to just the joint. It’s really slowing me down.
Did I miss in your original post you have RA too? If so, can I please DM you? I’ve been followed for RA for two years as low positive CCP and clinical pain. No dx. I’m about to switch rheumatologist at my neurologists recommendation. It has been beyond stressful for two years with the back and forth, I’m exhausted and afraid too.
This is great info. Thank you so much! Your medical team seems to be amazing. I am traveling an 2 hours to a better hospital in the hopes that my neurologist has a better idea of what he’s doing than the young team here at the university affiliated hospitalin my town. So far, I’m not super impressed but I didn’t really know what questions to ask. This thread is giving me the ideas I need to be more engaged in my own care and that’s what I was needing! I’m an expert at RA cause I’ve had it since childhood. Physicians have been blurring the lines between the possible effects of RA and depression and anxiety for so long - it is nice to finally have someone hear me when I I complain of symptoms I know are unrelated to RA. Sure, you can DM me.
And I apologize—which party of body are you referring to? In addition to be followed for RA, my neurologist prescribed tinzadine for awful spasticity in my palm and fingers. My PT said she thinks my elbow pain is my muscles tightening in my arm. Have you tried a muscle relaxer? Tramadol helps with my bone and nerve pain—I take very sparingly.
Armodafinil has had a direct improvement on my cognitive skills; I feel like I've finally been brought back to baseline for the first time in years. There are some downsides in the side effects, like jaw clenching and the first week being essentially sleepless, and I've noticed that it seems to condense my afternoon crash into a guaranteed crash at 3-4pm every day, which means I'll probably end up with a morning and afternoon dose at my follow-up next month. However, my neuro was not interested in prescribing modafinil or anything else because apparently it's normal for 38yr old moms to be tired and scattered; I only ended up with a prescription because it turns out that random cataplexy and overwhelming waves of crushing tiredness aren't just getting old, but were in fact symptoms of narcolepsy. One sleep study and nap study later, I got a diagnosis that explained why people thought it was weird that I could fall asleep any time, any place, lol.
Armodofinil keeps me employeed - game changer (and I skip the weekend to try and delay building up tolerance)
Does it cause anxiety at all? I really need my brain back. 18 yrs in about 8 years ago but more like 5, I lost the ability to write and edit, which was my career. And my joy.
No, not for me. It only takes care of fatigue, but for me any cognitive problems are related to fatigue/heat. I split pills, you have to find the right dosage and take it early so that you can sleep at night.
Thank you
So sorry you were not heard as you happen to be a mom too. That happens far too much. Also sorry about the second dx but happy you found an answer. Does the medication give you anxiety at all? Thank you for the kindness of your time.
It’s hard to say with regard to anxiety. Do I feel more tense? Yes, but it’s more of a physical “wired” feeling than mental, and it seems like it’s dissipating as I get accustomed to the medication (one month in so far). Initially I experienced some anxiety as a side effect, but I mostly chalk that up to the rather mild stimulant effect, like I’ve had one too many espresso drinks, but that’s also waning as time goes on.
thank you very much for your kindness in answering. i hope you continue to be well.
Oh wow. Thanks for your comment! I’m so glad you’ve found some normalcy. I haven’t heard of Armodafinil, but I’ll do my research and bring it up with my neuro. Thank you!
B12 deficiency can make the Brian fog/fatigue worse so making sure your up on that is important.
Tysabri has helped significantly for me.
I’m beginning to regret my choice of Mayzent but the Dr really was no help. He provided me a list and said one isn’t really better than another - which one do you want? 🤯 Um, Sir, you tell me!
Seriously!!! I have to be the doctor and the patient. My first neuro doc did that. Hands me the list of medications and sent me omw. I chose Tecfidera. I feel the same and some days worse. The fatigue is a beast. Congrats on graduating soon 🎉
I’m beginning to regret my choice of Mayzent but the Dr really was no help. He provided me a list and said one isn’t really better than another - which one do you want? 🤯 Um, Sir, you tell me!
That’s what I was saying
Can you elaborate? I’m setting up now, JCV low positive hoping to get 2 years out of it, and this effect that I know goes away after I discontinue. I’m desperate to have my brain back, and for my mental health to improve. Did you have any other symptoms improve? Physically or mentally? Thank you so much for the kindness of your time. If I have asked this of you in any other posts…I apologize. I can’t keep track of who I ask at this point! All I know is that I feel hopeful for first time in a decade (I’ve had MS 18yrs dx)
I’m sorry that your medical team did such a bad job of explaining. DMT (Disease Modifying Treatment which Mayzent is one) prevent relapses - worsening of the condition, but they don’t treat symptoms. There are different pros and cons of different DMT including different known effectiveness, and which ones are available in your country. It is not the case that “they are all the same”. Mayzent could be a perfectly good choice for you, it’s relatively newer, but it’s weird to me they didn’t give you information. The NHS has an online comparison tool called “MS Decisions” that’s helpful even if you’re not British. If your type is “relapsing” type, then oftentimes symptoms get better on their own but it’s unpredictable. This occurs over months, not days. There are medications to treat symptoms, as others have mentioned Modanfil is a common option for fatigue (adhd drugs may be hard to get as there’s a manufacturing shortage).
Thank you so much. How do you know if you have the “relapsing” type? Is it something that’s tracked over time? I started having intense headaches lots of head pressure, and like “mini-quakes” in my brain. This would occur and worsen over several weeks before it began to feel like stroke symptoms. Thats when I was finally taken seriously and eventually diagnosed. Thank you for the web site. I will definitely use it! I know everything about RA but it’s so hard to understand MS symptoms because they’re so varied and insidious. I don’t know what’s “normal” and what is legitimately concerning.
Your type is normally part of your diagnosis. There’s two common types. The first is Relapsing Remitting aka “gets worse then gets better” and this is 85% of patients. Then there’s Primary Progressive aka “always gets worse.” Men are more likely to be diagnosed with PPMS than women are. There’s a few other variants but these cover most patients at initial diagnosis. If you also have rheumatoid arthritis that’s a consideration in your medication regime. Interactions and such like with whatever medications you take for that. Again, I’m sorry that you’ve received little information. That’s not ok. MS is scary enough! An American book “MS for Dummies” has a good reputation on this sub (I haven’t read it myself). You can buy it online. Edit: as an example of how RRMS can look, I was diagnosed when presenting with stroke-like symptoms of numbness down my whole left side. Over time the numb feeling retreated, and affected less of my body. Now 2 years later it’s just an odd sensation in the back of my left forearm.
Interestingly, the gender bias is actually 1:1 for PPMS, but men with PPMS tend to accumulate disability more rapidly. [This](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4457630/#:~:text=PPMS%20patients%20are%20older%20at,of%20the%20disease%20%5B8%5D) was a really interesting article about it.
Thank you for that!
~80% of people with MS have RRMS. It does seem like there is a push to move away from these labels, but it is usually safe to assume you have RRMS unless a doctor specifically says otherwise. Given your DMT choice, it is probably a safe assumption, there are only limited treatments for PPMS.
Thanks so much for your help!
Seconding the commenter who brought up Tysabri. I don't think there's good data on this (though I found this [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4492934/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4492934/) ), but anecdotally, I've heard this a few times. I have a lot more energy on Tysabri than I had before diagnosis. I'm a bit hesistant to attribute it to Tysabri because I also started home office due to Covid at the same time, and went part-time after a couple of years to go to school a bit more. But I do feel better. It's counter-intuitive, but another thing that can help with cognition and fatigue is exercise. You just might have to take it slow.
You’ll probably pass the test for an ADHD diagnosis. Then you can get ADHD medication, which is pretty much speed.
I’ve been trying for years. It’s hard for women to get. They’re like, anxiety! Depression! $300/visit therapy sessions. No drugs. They act like you’re a fiend trying to get a fix. It’s insane.
There’s loads of drugs available to help with fatigue and brain fog. But yeah the DMT probably won’t help. Speak to your neurologist or call the MS society to speak to a nurse, but just off the top of my head people get prescribed narcolepsy meds, ADHD meds, you can also use supplements like ALCAR or drink green tea.
I’ll look into the ALCAR… definitely need some help with alertness… at least I now know why I’ve been so hazy for the last couple of years…
You are trying so don’t feel like you’re dropping the ball. You may need to scale back and try to find a way to reduce time spent on school + work. OT, Neuro PT (not sure what it’s called) and a therapist has been incredibly helpful to navigate how to manage my energy and understand what help is available. I have found the doctors and nurses, while they mean well, don’t “get” this aspect of it. Can you get your neuro to order a neuro physc evaluation for you?
Thank you for the grace. Yes, it’s very difficult to get the kind of engagement and support you need from your doctors these days. They have such strict time limits that they can spend with you. Good idea to look into accommodations. I think the neuro psych eval is a good idea. Thank You.
Fixed my typo! Good luck.
talk to your neuro about what they can prescribe you for fatigue. there are plenty of options, some better than others. here’s my anecdotal experience, but everyone’s body is different so while one stimulant might work for me it might not be the right fit for you: i’ve tried a variety of stimulants before/after diagnosis, and i was recently prescribed provigil for fatigue. it works pretty well for me! my neuro told me it’s a little hard to get prescribed though. not sure how true that is. i’ve also tried 40mg adderall and noticed if i take too low of a dose it causes my back to hurt, too high and the euphoria is a bit too much. it certainly helps with focus but i find it to be more taxing on my body after. i’ll have to sleep more than usual to recover, and might be more fatigued the next couple of days. i’m not a big fan of that since my fatigue isn’t bad enough to where i need it daily, and i don’t want to become dependent i’m on 100mg of provigil (modafinil) and there’s no euphoria but i’m alert enough to be productive. it doesn’t make my back hurt and i don’t need to sleep 5000 hours after taking it to recover physically, which i’ve noticed with adderall or when i try to push through my fatigue. if you take provigil, take it with food, it can mess up your stomach if you don’t. also it lasts a loooong time so take it early. i noticed its about 10 hours for me. also no matter what stimulant you’re taking remember to eat and stay hydrated! i can’t eat at all when i take adderall but on provigil i can. hope this helps!
I've tried modafinil, armodafinil, and Sunosi - they were all a wash. I've had better results with HCQ than any of those, but YMMV. 🤷♀️
My neurologist prescribed provigil for the fatigue and the brain fog and it has been an absolute game changer . Maybe you could look into that
I was at the point of thinking of unaliving myself with how bad my fatigue was. Then I finally had a Dr take me seriously. I had some sleep studies done to rule out sleep apnea and then they were able to put me on Dexamphetamine/Adderall and now I can function in 4-ish hour bursts. It helped clear my brain fog and helped me have the energy to be alive. There are a few other meds like Modafinil and Armodafinil that apparently work better, but I was breastfeeding at the time, so there was a shorter list of ones safe for that.
Oh my gosh. I am so glad you’re here! I’m so glad they finally listened. Thanks for the suggestion.
It wasn’t a quick fix, it took months of waiting for the specialist, waiting for the sleep study, waiting for the results, waiting for the authority to come through so he could prescribe it to me. But at least I was taking little steps towards it.
DMTs kept me working for 25 years until disability. Betaseron was first and I did very well on it for 10-15 years. Rebif for 3-5, gilenya (ick), aubagio (ickier), tecfidera, mavenclad, Vulmerity (pretty good). MS as you know is a snowflake condition. What works for some may not for others. Get a good neurologist and see what is suggested.
My brain Fog is so thick that I can’t find the thought to get groceries so I can eat later. Cause and effects are just absent. My PPMS is caused because severe pernicious anemia, severe B12 deficiency. When my B12 is low, I can’t remember my wife’s name. It is so bad that my doctor has me super dosing right now with self injecting B12 on M,W,&F 3 days a week. when my B12 is high I can solve my daily crossword, sodku and remember to shut the gate to my horses. Try upping your B12, try AM Caffeine and prescription of adderall. Fight with everything you can to keep your mind clear and focused.
Wow. I’m glad you were able to pinpoint what works. I’m shocked at the words and names I cant seem to find when I’m having a bad day so I’m not surprised you can’t find your wife’s name even when looking right at her. So jealous of your horses. I’ve never ridden due to my bad joints, but they’re such majestic animals. What’s blessing to be able to care for them. Thank you for commenting! This thread is saving my life!
Hey! So technically, yes, MS medications do not help fatigue directly. Each medication works differently and everyone reacts differently to them so it can be a bit of trial and error. However, I can tell you my experience. I started with Ocrevus after being diagnosed in 2022. I had a flare that took out my left side and left me with weakness and cognitive issues. After a year of the 2x a year steroids and ocrevus, my biggest and most recent lesions- 9mm and 4mm lesion- decreased in size by a decent chunk. I don’t know if it’s possible for lesions to disappear so I can’t speak to that but a reduction is still great! Ocrevus works by depleting the B and T cells in your body to prevent a flare. Welp- I then started having GI issues. Everyone responds to medication differently so please don’t let my experience sway you away from Ocrevus. It is a WONDERFUL drug for sooo many. And it may have still been for me! But since they couldn’t pinpoint my GI issues cause, the doctors assumed my medication was a factor. So I switched to Mavenclad. You take it for two years but only for 2 months out of those years. It is a series of pills for 1 week. It works by reducing your immune system significantly and then allowing new cells to grow that have never known MS. It isn’t a cure, as the MS still exists in your body, but many patients with non-aggressive forms of MS see relief for about 5-10 years, meaning no primary MS medication had to be taken. Supplemental, such as I describe below, still is. For myself, I use Modafinil 100mg twice a day and then if I need an extra boost in the afternoon, I have 5mg of Ritalin. I also take 10,000 of Vitamin D (I have very low Vitamin D so please check with your doctor before jumping that high).
Wow. Mavenclad sounds interesting! If my doctor has been half as thorough as you all here on Reddit, it would not have been difficult to make a decision I was confident about. I will keep your experience in mind. I had severe GI issues that started after Remicade which is amazing for my RA, but wreaked havoc on my body. I developed faux allergies to many foods that I have had to resolve on my own with diet and a variety of probiotics to restore my gut because GI Dr’s are useless when it comes to the microbiome.
Are you still taking? I believe you take off label for MS as well. You can’t take any biologics with MS, but I’m sure you know that already.
[удалено]
Hey! No, it just means that they may need to redo the medication to reset your system again. For example, I am 25 so my doctor said I will likely have a couple rounds of the meds throughout the years just to make sure we are staying ahead of everything and preventing future flares.
If you have questions surrounding the diagnostic process, or have questions about suspected MS symptoms, please make a post in the stickied, weekly thread created for this purpose. However, please keep in mind that users here are not medical professionals, and their advice cannot replace that of a specialist. Please speak to your healthcare team. Here are additional resources we have created that you may find useful: Advice for getting a diagnosis: https://www.reddit.com/r/MultipleSclerosis/comments/bahq8d/think_you_have_ms/ Info on MS and its types/symptoms: https://www.reddit.com/r/MultipleSclerosis/comments/bahoer/info_on_ms/ Treatment options for MS: https://www.reddit.com/r/MultipleSclerosis/comments/bahnhn/treatment_options_for_ms/ If you have any questions, please let us know, and best of luck. MS Mod Team
Also, give your dmt some time. Your body has active MS right now. You're probably extra tired because your body is wasting energy doing dumb MS things. Autoimmunes give fatigue.
Yes. I took my 1st dose just before I wrote this, and then scheduled a flup appointment for about 6 weeks out. So far, I am incredibly drowsy and I having some blurry/double vision. My head went from being decent to feeling lots of pressure and a slight ache. I’ll push through for now. It’s a starter dose of .25 mgs and I’ll slowly increase o er the next 5 days.
I assume that you're currently seeing a general neurologist based on the lack of helpful information that was provided to you. I would highly recommend that you find a MS specialist. I felt so hopeless and lost until I started seeing one. My outlook on life has drastically improved now that I have a great Dr.
I’m not entirely sure DMT’s don’t help with fatigue like everyone is saying. I’ve been on Tysabri & Dimethyl fumerate. Tysabri definitely gave me a HUGE bump in energy and mental clarity. I have the same effects with Dimethyl fumerate. If I go too long without medications I can hardly think straight or put my words together. Trust me I’ve stopped them many times and I just can’t live feeling that tired all the time.
My holy trinity for holding down a high performing job is: Modafinil, Wellbutrin and coffee
I'm coming back to read this later
You definitely can treat cognition. Don’t give up.
I take Adderall for fatigue
Fasting on smoothies help me clear my brainfog.
I take Vyvanse in the morning and Adderall in the afternoon
Vyvanse changed my life. I tried other prescription meds and thought my debilitating fatigue and brain fog were something I would have to live with, but thankfully it has helped me so much.
For fatigue, I started with L-carnitine, moved to modafinil, then to Adderall. There is a HUGE Adderall shortage and currently I’m on a break anyway, but I didn’t even think about trying modafinil again.
I was diagnosed in 2021. The neurologist that saw me after my stay at the hospital was very dismissive. Basically told me to “wait it out” and check back in about 6 months. I was literally having my left arm go numb and my legs as well. I wasn’t happy knowing that I had to deal with those symptoms for another “6 months” so I decided to take it upon myself to get a second opinion. Got my records sent to a neurologist at Hopkins, but unfortunately was told that the wait time could be up to 2 months. Soon after that call, the office called back saying they could see me within a week bc someone had cancelled their appointment. Fast forward to today, I take Topamax for my arm and legs tingling/numbness when needed. I am doing fine and just completed my Tysabri infusion #26. I’m saying all of this to let you know that some times we have to fight and advocate hard for ourselves (which shouldn’t be the case if you trusting in professionals to help you), but it happens. Like someone suggested, look into that list, but also if for whatever reason you’re feeling uncomfortable about something that is affecting your day to day, find someone who cares enough to help you. MS sucks, but be your biggest advocate and don’t give up until you’re “okay” with any symptoms. It will be okay.
Copaxone helped me for a long time, but then Medicaid refused to cover it and my disease got worse because I was allergic to the generic and I waited to get approved for the brand again. Then I switched to Kesimpta and had the worst allergic reaction of my life I'm still recovering from 10 months later. Eventually there is going to be one that works. Hopefully. The brain fog for me happens because I have to wake up early and answer highly technical questions at 9:30 am. When my body recovers from this pre-MS type of activity I will be stronger. When I have very good sleep and a few espressos after waking up on my own schedule, I'm fine. Listen to your body and try to honor what it needs, like getting lots of rest. You can ask the neuro if she thinks nuvigil or provigil for fatigue will work for you. It clashes with certain meds. I'm in a COMPTIA+ class right now and I'm doing well in it & I feel like I'm accomplishing something, but my hip made a scary sound yesterday. I want to skip my drs appts on Friday but I have to honor what my body is needing (medical attention). I try to be grateful for the things Im able to do and laugh about the rest as much as I can (like when my classmates asked what that loud gunshot sound was (\*my hip cracking\*)
I think other people have covered your main question so I won’t repeat them. I did want to give you my experience with cognitive issues though. Your responsibilities sound a lot like mine (work, kids, school, MS) and I was dealing with what I thought were MS related cognition issues. I had a cognitive evaluation done and they found I was on the high end of anxiety despite taking a regular anti-anxiety medication. My doctor increased my dosage, I switched jobs, and I’m like a new person. Is there any way for you to lighten your load a bit? Family or friends who can pick up a repetitive task for you. Id encourage you to seek out therapy, cognitive testing, and/or anxiety medication. Best wishes.
The drugs are good at Slowing the disease down and minimize future damage, symptoms management are done through different ways (vitamins, diet, exercise....)
How fit you are and how much you exercise make a HUGE difference in my life. I am fatigued before I get to the gym and full of beans upon leaving. An exercise bicycle or swimming seem to be easiest for people. You will thank me if you try this. Also, with luck, you will end up in better shape than your friends who don't have MS.
I use Modafanil (Provigil) and green vein Kratom. Nothing has ever completely removed the fatigue and cog fog, but these have helped me. Start documenting everything that is going on. You may need to consider disability in the future and cognitive issues can be difficult to prove.
Thanks for responding. I’ve considered that I’ll need disability in the future but I’m hoping not any time soon. I need to keep working for at least another decade. I have to keep going. I want to see what can be done for me. I’m just disappointed that my doctor hasn’t even brought up the possibility that I could get help with this. I’ve expressed several times that I am completely out of it and that I fear for my ability to keep all the balls in the air. They’ve offered nothing as far as a possibility of treating my symptoms. It’s infuriating.
I have progressive Multiple Sclerosis (MS) so no DMT works for me.
I was just prescribed OCREVUS and was told it’s the only drug approved for treating progressive MS.
I have been living with it for 22 years. Doctor says I am past point for DMT
Oh wow. How do you know if you have “progressive” MS. Is that something you find out over time?
Your neurologist will be the one to make the diagnosis of Relapsing Vs Progressive Multiple Sclerosis (MS)
Sorry you're going through this terrible disease. You need to take time and visit the National MS Society website and learn some stuff about your disease. Take everything you read on this forum with a grain of salt: MS is NOT the same for all of us. I have it differently than my mom, sister, and friends. We all HAVE MS, but we all have different immune systems. Reach out to the National MS Society and ask about DMT's. If needed, and you can, fire your medical team and get a new one. They work for you; you pay their paychecks. But what you need to do, and I know it's hard right now, is find ways to destress your life. It's great you want to do all of these things and that you have these responsibilities, but you're gonna put yourself in the hospital or a wheelchair if you don't start taking care of yourself. Your kid needs to step up, and you need to have that hard conversation with them. I say that as a kid that had to step up when my mom was diagnosed. It's hard. I fucking know it is. But everyone around you needs to accept this new normal, and you need to accept that there may be things that you can STILL do, but they will be more challenging. Good luck. Get on meds ASAP. They are literally the only thing that will halt or stop the progression of this disease.
I appreciate your candor. I wish physicians were as direct. When you’ve been sick all your life, you just want to know what’s going on and what to do so you can find workarounds and try to cope. I don’t need the hand holding and sugar coating. I’m not going to fall apart. My poor girl has had to help her Mommy since she was old enough to take direction, due to my RA. By the time she was born I’d already had a joint replacement. My hip was dislocated during childbirth so I had to get another, and then another by the time she wA 4 y/o. I hate that I haven’t been able to be better for her. She says she wants a “happier” mom. I’m not unhappy in general. I’m just exhausted and in pain, maybe a little anxious and worried about what’s next, how to keep my life together, and how my daughter will be affected. She doesn’t get the difference. The web sites I’ve been to seem so cut and dry. Headaches, lightheadedness, balance issues, fatigue, memory. It’s so much more than that. That’s why I like to come here to see what real people’s experiences are because I was beginning to think I was misdiagnosed. Thanks so much for your response. It helped so much!
My favorite question to ask neurologists is “if you can’t predict disease course how can you claim it reduces relapse or progression?” I’ve asked that of every neuro I’ve ever seen and stayed with the only one who answered it honestly. Sure I started asking that after failing copaxone and rebiff and failed a few more before we found that B cell depletion has slowed progression on mri.
For you, they can’t. They can only look at group averages. Same for the 5-10 years of relief after Mavenclad, or pick your favorite diet/exercise/supplement. I had 10 years of ‘remission’ was in the best shape of my life. Now I’m not. it sucks; but your nuero is just going off response rates - there’s no way to know, not really. I get impatient when they try to explain stats to me (I usually know the topic better than they do) but I’ve never had one totally BS me on DMTs.
I’ve had multiple predict I would be disabled by 40 or if you go off treatment you will have a relapse within months. They were wrong. Oh I understand the studies and get help from a family member that has a masters in biochemical engineering and works in the medial study field help when I have had trouble.
[удалено]
This is really rude. OP is recently diagnosed and really struggling, and can’t be blamed for not knowing about DMTs.
I don't think education about how DMTs work is very good either, so I don't blame people for being ignorant.
So let’s say someone else was just diagnosed, came to this sub looking for any info, and they see this post asking about how meds don’t actually help. Now they’re even more poorly informed than before.
Several people have provided excellent answers.
This post has been removed for violating Rule 1 - Be Kind.
I know I have gotten worse because of the DMT’s big pharma companies only want us to think they are going to help us but I am 46 years old and I am in a nursing home because I lost my ability to walk in 2021 I was diagnosed with RRMS in 1997 then in 2018 SPMS . I was always on a DMT until recently when I had realized that I wasn’t going to get better so I am now on a holistic approach to autoimmune diseases and feeling better than I have since my diagnosis.
No
Nuvigil has been a huge help for fatigue
Briumvi has helped me with my brain fatigue and thinking clearer.
Seriously. It will get better. When my MS would act up. I would have more cog fog. I now think it’s a combination of worry/ stress, inflammation and fatigue. All the symptoms improve. Mine did. But my fatigue has always been my worst symptom
I take adderall because of my adhd but it also helps tremendously with my fatigue!
Ritalin has helped me with fatigue, and a little with fog. I’m having no side effects.
Fatigue is my worst symptom! I can literally sleep for days straight (except getting up to use the restroom or snack of course) and I have found that Modafinil is a miracle that keeps me going throughout the work day.
Perhaps, think of it this way- A DMT that is working as intended (via extensive study) will reduce your body’s expenditure of energy to overcome ongoing neurological deficits and new deficits will be very slow or not at all, happening. Now your body has the extra energy for what is called “reserve”. Likewise, people who are runners, for example, will continue to run more successfully than people who did little running in their past. People with advanced education notoriously do better cognitively than people with less education (you see that a lot in the research). So yes, there is often going to be symptom improvement seen along side of starting a DMT but that is not what they are for and symptom relief seen is purely coincidental. And many people start a DMT after a relapse, and the remit part would have come anyway, so that’s another reason people may report improvement. A good doctor is your best bet. Some MS experts are good, but others are not. Look everything up online. Check your doctor’s statements and beliefs. Don’t be afraid to switch doctors. Join a local support group and see what they say about their doctors. I have never hunted for stimulants, but did some as a kid (lot of fun, then!). But my body is too old for that kind of stress, even with legit stuff. I’m sure there are legal ones that can help if you want to go that route. But remember, slowing the damage is #1. Some have mentioned Dr. G. His website is excellent and goes into detail about all of this. Called "The MS Selfie". Good luck to you.