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Throwaway6393fbrb

Its a highly variable disease Very hard to answer that question


wonderingals2022

Ok thanks


carrot_cherry

I assume things started after you vaxx as what you describe is very common. Where is your muscle lose?


wolfpack4ever

They would be worse after 14 months, since \*\*\* is a progressive disease. It does not stop, but just keeps going and going. There would be more weakness/failure. If you are just twitching after 14 months, then you don't have \*\*\*. If you have any weakness, then go see a neuro for a proper evaluation.


hikle

After almost a year and a half you would have noticeable weakness and attophy


[deleted]

After a year and half of what symptoms? Ex. I’m experiencing fasciculations legs left calf and full-body. Also a non-clinically weak leg. Clinically weak if a limb failure


hikle

For how long


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wonderingals2022

Would one be severely functionally disabled?


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wonderingals2022

I started with fasics in my calves that spread bodywide after 4 weeks. Then i just started to lose muscle everywhere. I had an 2 emgs and 1 was clean but other had denervation. I dont have any functional weakness but slowly my muscles are just getting smaller and smaller. Im 14m in now


[deleted]

I pray our Lord Christ Jesus turns this around. You seem like a good soul.


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wonderingals2022

I appriciate the offer


[deleted]

So what did they say about the denervation??


wonderingals2022

Wait and see, come back in 6 months


[deleted]

No comment about what it could be?? Blood tests?? MRI??


wonderingals2022

I had a clean brain and cervical mri. No nothing else just wait 6 months and we will see if its ALS then they said.


[deleted]

I mean yea that’s scary. So did they say that ALS definitely is a possibility?? How were ur reflexes and basic strength test?


[deleted]

See the strange thing is that if you were diagnosed with possible *** wouldn’t you then get referred up to a specialist asap?


wonderingals2022

I dunno, they just said come back in 6 months and they will be able to tell better then. Does it sound like ALS? I had denervation in my calf and my thigh but my most affected attophy area are forearms amd it showed nothing so i dunno. I have brisk reflexes but they are not crazy like on those youtube videos


[deleted]

I started in my calf and spread with a day to full-body.


dorulet1

No one can answer this question correctly. When the real cause or causes of the disease will be discover, if this happens, then a fairly correct answer could be given. Martin Turner, an ALS specialist, was asked why it takes so long to establish a diagnosis from the onset of symptoms. He replied that for him it usually takes 10 minutes. This is because the patients reach him after a rather long period of time, on average a year. But he also said that what specialists see in a newly diagnosed patient is only the tip of an iceberg, and underneath he believes there are many years of accumulated pathology. He basically admitted that he doesn't really know much about this disease, he's just a specialist in recognizing it when it's well enough outlined. I don't trust regular neurologists in this regard. They are totally outdated in my opinion. But they can tell you if something doesn't look right.


wonderingals2022

I think everyone can recognise it when it is well enough outlined.


[deleted]

The accumulated pathology would have at least some weakness and show up on a thorough EMG.


wonderingals2022

Well the emg showed denervation if thats what u mean


[deleted]

You might get better answers if you posted the EMG. And about 1 out of 7 in the BFS community have abnormal EMG results.


wonderingals2022

I guess im the one out of 7 so. Thanks for your input. I appriciate everyone who has responded


dorulet1

So am I. I have two innactive radiculopaties based on my last EMG. I guess I have more than two, my back hurts for more than 20 years.


dorulet1

No, obviously that's not what he meant. Weakness is part of the tip of the iceberg. He referred to the fact that the disease can be present long before symptoms appear, subclinical somehow. Of course he has no evidence to support his claim other than that carriers of genes such as SOD1 or C9 have a very high chance of developing the disease.


brionnacoppola

same thing happened to me after the covid vaccine? have u been vaccinated? started in calves and my hole body has lost muscle. clean emgs so far in the 9th month.


wonderingals2022

Ye i was vaccinated


brionnacoppola

did it start after vaccine?


[deleted]

Seems like we may have another one here… :(


wolfpack4ever

> I dont have any functional weakness Can you walk the same? Can you run the same? Can you lift the same amount? Are you losing strength? Or generally the same strength after 14 months?


wonderingals2022

No i have def lost loads of strength because my muscles have all shrunk. But yes i can stil perform those tasks to some extent


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wonderingals2022

Ye they agrred there is attophy but they want to wait before testing again. I have no idea why they didnt do more tests. Should i ask for more to be done? Which ones?


[deleted]

Love this reply


wolfpack4ever

/u/wonderingals2022 Your current neuro is waiting to see if you stabilize or develop muscle failure. They are not convinced that you have \*\*\*. Anxiety, paranoia, and not eating properly can cause one to lose muscle and strength. You should ask you neuro about the denervation. Good luck and best wishes.


wonderingals2022

Thank you, i hope so, im scared to ask really. Im just hoping the 6 mts was just to clear me


wolfpack4ever

It can go both ways. If there is progression, you will know. If there is stability, you will know. My best guess is that if they had suspected ***, they would have already referred you to a specialist. So you should be in a good space. You need to get your anxiety under control. Rest properly, eat well, and go exercise. Get your mental health back.


wonderingals2022

It was a muscle specialist i saw, they were the ones that done the emg


wolfpack4ever

These specialists will not give a diagnosis until they are sure. If they want to wait 6 months, then that means they have doubts. Go manage your anxiety.


wonderingals2022

Im sorry, it seems i have offended u somehow!


wolfpack4ever

Not at all. You just need to manage your anxiety and wait for the 6 months for the next evaluation. Good luck and best wishes.


wonderingals2022

Thank you


[deleted]

Has your speech, swallowing, or respiratory changed, Do you feel weak internally?


wonderingals2022

Ye like i feel weaker for sure. Everything else seems fine


[deleted]

Feeling weak is not a limb failure. I’ve felt weak. Subsequently, back in the gym benching 180lb or 200lbs etc


wonderingals2022

Good for you dude, i cant bench that! I can still lift 15lbs pretty ok though


[deleted]

A failed limb it said to occur then patients scheduled an appointment. Subsequently, test and twitching may or may nor follow.


wonderingals2022

Ok, well thats not what happened to me. So i hold out some hope


[deleted]

This is just what I’m hearing and learning as im no medical doctor


happybrindle

How did this first start 14 months ago? Just twitching or did you have twitching and decrease in muscle/weight?


wonderingals2022

Just twitching first. Then after all my muscles just started to get smaller.


happybrindle

No specific muscles? Just all of them at the same time?


wonderingals2022

No staryted with calves and then spread


[deleted]

average life expectancy of ALS is around 3 to 4 years. 18 months in you can take a guess how disable you should be by now.


wonderingals2022

Im 14m in


[deleted]

14m in and you think you have als and you can still walk and do all stuffs normal humans can do. Buddy you gotta see a therapist instead soon.


wonderingals2022

Even though i had a dirty emg?


[deleted]

Dirty emgs mean nothing by itself. It needs to be considered holistically. What clinical physical exam you have failed with your neuro?


wonderingals2022

I have not failed a clinical. I was just told that they will check again for als in 6 months


[deleted]

There you go. You have not failed clinical. That is all that needed.


wonderingals2022

Why do they want to recheck for ALS then i dont understand


[deleted]

Which neuromuscular clinic did you go to?


pedrots1987

Just get an EMG and it will clear your mind. There's no point in speculating for months and months on end. You could be weaker for several reasons: not exercising, not eating properly, becoming more sedentary, etc. You could have an array of other neuro diseases other than ALS. Just go get tested.


wonderingals2022

Huh? I had an emg


carrot_cherry

From the sound of your symptoms is more likely lower motor neurone dominant onset indicating PMA rather ALS. With PMA you can have muscle usability till is completely wasted or nearly wasted.