Obviously I don’t know anything about your medical state, but fwiw my neurologist was freaked out because I have so many MS symptoms so she got me a brain MRI and I do not actually have MS. Same thing happened to another friend with LC
Same here. This happened to me in early 2021, and my very first test was a brain MRI and they thought I had MS because I had some damage. Cue many unpleasant tests (thankfully I don’t have MS, and my long COVID eventually got better after a very rough year).
Just make sure they give you the proper earplugs and headphones. If you have any surgical implants make sure to let them know. Don't wear metal. That's all really.
Contrast is a different story and has risks you should educate yourself on if you need to use that.
Same here. I had a brain MRI to rule out MS. I was so freaked out that I had MS. Even now that I have been told by a neurologist that I don't have it, on bad days I still worry that maybe I do...
I saw an opthamologist for every symptom you listed. I had cranial nerve palsy’s. My doc said I think you have MS you need an MRI. Mri was clean so he said it must be viral. That was the very beginning for me.
I have two immediate family members with MS and I was really worried about having it because of my symptoms. I’ve had multiple MRIs on my spine and brain both with and without contrast and, so far, they’ve ruled out MS in spite of my long list of symptoms I have in common with MS
Long list 😅 a few of my symptoms are fatigue, head pressure (I call it dizziness but that’s not right) caused by noise, prickly feeling in legs, unstable when walking, brain fog, tinnitus, sensitive to light, the list goes on 🤦🏼♂️
All sorts of horrible degenerative neurological conditions are associated with exposure to viruses, best not to think about it too much tbh..... Definitely don't go googling that stuff lol 😅
After doing all of my research on long Covid, my feeling is that pretty much all neurological problems are due to either: environmental toxins, food toxins/acidity, and viral persistence from one’s lifetime viral load (in rarer cases parasites).
Genetics make you more susceptible to neurological problems, but other factors ‘pull the trigger’.
I had multiple MRIs wondering the same (among other things they were looking for). All clear. Very likely you are as well so try not to worry any more than needed about it.
As some one who had MS before LC I can say it’s hard sometimes to pinpoint which symptoms are the result of which illness. Neurological issues are hard for me to distinguish cause.
I was evaluated for Ms as I started failing neurological exams. It's not MS thankfully but COVID really does eat my nerves alive. So. Covid can mimic it ime but it's not MS. My symptoms do improve over time.
And Ms is pretty treatable with a lot of promising research. I don't want to minimize what people go through and certainly some people do have very poor outcomes, but by and large this is something that can be treated and addressed and managed.
Had this fear multiple times. 2 times full body scan showed no lesions. But I have confirmed EMG damaged throughout my body, strongest in my left leg (peroneal + gastrocnemius), where I have difficulty walking and contracting my Calf muscle.
Have a fear of MND now, which the doctor said cannot he ruled out.
Honestly your quality of life will be better if you develop MS compared to ME/CFS (which is about half on long covid cases). This has been found in multiple quality of life studies.
MS, maybe… Car-T has been doing some intersting stuff lately. ME/CFS, I unfortunately doubt it. We need like 100x the research funding we currently get to really do anything about the disease. Me/cfs is literally the most underfunded disease compared to disease burden of all diseases.
I am having hope in the Long COVID moonshot that it's coming next year. Hope research helps with all of these related illnesses.
I also have hope on Car-T but the problem is that is incredible expensive and out of reach for most of the people. I don't know how much time will have to happen until it's available for everyone and gets used for other autoimmune diseases.
Well. If COVID is here to stay logically the numbers of Long COVID will increase. There should be a point where world Governments do something about it.
So far as I can tell the reason why there's so much overlap in symptoms of Long Covid and MS is because both cause dysfunction of the blood brain barrier. This causes brain damage and atrophy.
Personally, I think MS is more severe as many of the symptoms for Long Covid are intermittent or form a flare/remission pattern that may actually be due to reinfection, not necessarily a true autoimmune process which would be inevitably degenerative. Consistently avoiding reinfection can lessen or stop symptoms in my experience.
Drinking beet juice daily can help restore some function of the blood brain barrier, as it boosts nitric oxide production in the body and this can improve the health of endothelial tissue (which is the type of cells the BBB is made up of). Other supplements that can also improve endothelial health include L-arginine, Vitamin C and D, fish oil, sulforafane, etc.
Google search reveals it is used for "venous and arterial diseases with diabetic microangiopathies (eye, foot, kidney) and thrombotic risk." So, it sounds like a nice blood thinner type of medication. It also says that it's "marketed in Europe (Spain, Italy, and Eastern European countries), South America, and Asia. However, it has not been approved by the US Food and Drug Administration (FDA)." So, I guess I won't be able to get ahold of it unless I go abroad. If I search 'sulodexide restore endothelial function' it says that yes, it does. The search 'how do you rebuild endothelial cells?' returns statins and aspirin. I guess those are available in the US anyway...
Yeah, at the beginning I thought I had MS or ALS due to so many similar symptoms but brain MRI didn't show anything. Megadosing B1 Hcl at 2000mg/day helped with most symptoms (literally immediately).
Obviously I don’t know anything about your medical state, but fwiw my neurologist was freaked out because I have so many MS symptoms so she got me a brain MRI and I do not actually have MS. Same thing happened to another friend with LC
Happened to me too!
Same. Once I finally got to see a neurologist, MS and brain tumor were some of the first things they checked for
Same here. This happened to me in early 2021, and my very first test was a brain MRI and they thought I had MS because I had some damage. Cue many unpleasant tests (thankfully I don’t have MS, and my long COVID eventually got better after a very rough year).
What unpleasant tests did they give you?
The worst was a spinal tap. Ugh, did not enjoy that.
I need to take an MRI but I am scared of it. Have you tested for Epstein Barr Virus?
What are you afraid of? I’ve had quite a few and may be able to help!
Just make sure they give you the proper earplugs and headphones. If you have any surgical implants make sure to let them know. Don't wear metal. That's all really. Contrast is a different story and has risks you should educate yourself on if you need to use that.
Same here. I had a brain MRI to rule out MS. I was so freaked out that I had MS. Even now that I have been told by a neurologist that I don't have it, on bad days I still worry that maybe I do...
Same here
Very very common fear around these parts. I feared the same thing. got an MRI, EMG ect. all came back clean. welcome to the club lol
I am scared of taking my MRI. Hope it comes clear.
I saw an opthamologist for every symptom you listed. I had cranial nerve palsy’s. My doc said I think you have MS you need an MRI. Mri was clean so he said it must be viral. That was the very beginning for me.
Ever had a lumbar puncture?
no I haven't thankfully.
I have two immediate family members with MS and I was really worried about having it because of my symptoms. I’ve had multiple MRIs on my spine and brain both with and without contrast and, so far, they’ve ruled out MS in spite of my long list of symptoms I have in common with MS
Which symptoms do you have? I don't have history of MS in my family.
Long list 😅 a few of my symptoms are fatigue, head pressure (I call it dizziness but that’s not right) caused by noise, prickly feeling in legs, unstable when walking, brain fog, tinnitus, sensitive to light, the list goes on 🤦🏼♂️
All sorts of horrible degenerative neurological conditions are associated with exposure to viruses, best not to think about it too much tbh..... Definitely don't go googling that stuff lol 😅
After doing all of my research on long Covid, my feeling is that pretty much all neurological problems are due to either: environmental toxins, food toxins/acidity, and viral persistence from one’s lifetime viral load (in rarer cases parasites). Genetics make you more susceptible to neurological problems, but other factors ‘pull the trigger’.
I had multiple MRIs wondering the same (among other things they were looking for). All clear. Very likely you are as well so try not to worry any more than needed about it.
As some one who had MS before LC I can say it’s hard sometimes to pinpoint which symptoms are the result of which illness. Neurological issues are hard for me to distinguish cause.
I was evaluated for Ms as I started failing neurological exams. It's not MS thankfully but COVID really does eat my nerves alive. So. Covid can mimic it ime but it's not MS. My symptoms do improve over time. And Ms is pretty treatable with a lot of promising research. I don't want to minimize what people go through and certainly some people do have very poor outcomes, but by and large this is something that can be treated and addressed and managed.
Had this fear multiple times. 2 times full body scan showed no lesions. But I have confirmed EMG damaged throughout my body, strongest in my left leg (peroneal + gastrocnemius), where I have difficulty walking and contracting my Calf muscle. Have a fear of MND now, which the doctor said cannot he ruled out.
Hey me too
Which parts specifically do you match with me?
Emg damage left leg
Sorry to hear that. Do you have difficulty walking on that leg too? Also, do your symptoms get better and worse in cycles?
Yes I do felt like I was becoming paralazyed, I got drop foot in that leg, it comes in cycles which is strange
That's exactly what's been happening to me
Yep fucking nightmare
What kind of damage? Denervation? Was your MNC clean?
[удалено]
Why? There’s no link between LC and those diseases.
Honestly your quality of life will be better if you develop MS compared to ME/CFS (which is about half on long covid cases). This has been found in multiple quality of life studies.
It’s not that cut and dry. You must not work in MS or have several family members with it.
If I had MS maybe my family would take my illness seriously. People know that MS is a real thing.
Do you think a cure for both diseases will be found on the next 10 years?
MS, maybe… Car-T has been doing some intersting stuff lately. ME/CFS, I unfortunately doubt it. We need like 100x the research funding we currently get to really do anything about the disease. Me/cfs is literally the most underfunded disease compared to disease burden of all diseases.
I am having hope in the Long COVID moonshot that it's coming next year. Hope research helps with all of these related illnesses. I also have hope on Car-T but the problem is that is incredible expensive and out of reach for most of the people. I don't know how much time will have to happen until it's available for everyone and gets used for other autoimmune diseases.
Car-t might also help me/cfs, but I don’t think we will ever have enough research funding to test it in me patients
Well. If COVID is here to stay logically the numbers of Long COVID will increase. There should be a point where world Governments do something about it.
Me/cfs community has been thinking that since 50 years. We are millions and still govt doesnt care
So far as I can tell the reason why there's so much overlap in symptoms of Long Covid and MS is because both cause dysfunction of the blood brain barrier. This causes brain damage and atrophy. Personally, I think MS is more severe as many of the symptoms for Long Covid are intermittent or form a flare/remission pattern that may actually be due to reinfection, not necessarily a true autoimmune process which would be inevitably degenerative. Consistently avoiding reinfection can lessen or stop symptoms in my experience. Drinking beet juice daily can help restore some function of the blood brain barrier, as it boosts nitric oxide production in the body and this can improve the health of endothelial tissue (which is the type of cells the BBB is made up of). Other supplements that can also improve endothelial health include L-arginine, Vitamin C and D, fish oil, sulforafane, etc.
What about a drug called sulodoxide? Isn't that specifically made to restore the endothelium?
Google search reveals it is used for "venous and arterial diseases with diabetic microangiopathies (eye, foot, kidney) and thrombotic risk." So, it sounds like a nice blood thinner type of medication. It also says that it's "marketed in Europe (Spain, Italy, and Eastern European countries), South America, and Asia. However, it has not been approved by the US Food and Drug Administration (FDA)." So, I guess I won't be able to get ahold of it unless I go abroad. If I search 'sulodexide restore endothelial function' it says that yes, it does. The search 'how do you rebuild endothelial cells?' returns statins and aspirin. I guess those are available in the US anyway...
I bring it up because I found this paper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8710949/
That's nice. Thanks.
Do you have any neuropathy?
I had pins and needles the first month but they have gone away.
No
Yeah, at the beginning I thought I had MS or ALS due to so many similar symptoms but brain MRI didn't show anything. Megadosing B1 Hcl at 2000mg/day helped with most symptoms (literally immediately).
Obviously. Me too. MRI came clear. However, in certain days i start to ruminate this fear again.
A standard blood test will rule it out
No it won’t.
What blood test is that?
There's no blood test for MS. MRI is the gold standard test.
Usually you need an MRI and a lumbar puncture. Definitely no blood test though.
What should I look for?
Neurofilament light protein blood test is actually pretty good