Possible symptoms?

Chapman

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Hello everyone. I’m 45 years old. I have als in my family. My grandmother and my father passed of it and other distant relatives. About 8 weeks ago I had been sick and developed calf twitches both calves at that time. Fast forward 8 weeks and I’ve since had COVID and myocilitis.) caused a lot of leg fatigue. I’m well past COVID but these calf twitches persist and sometimes other parts of my body but mostly calves. Only other abnormalities would be a sore shoulder from exercising( done before the viruses I had but still has some soreness). I went to family doctor and explained family history and all that has been going on. He seemed certain it all had to do with the viruses I’ve had. I do not have any muscle weakness that I’m aware of. Obviously I have some anxiety and was wondering if I should go back to my family doctor and ask to go for some further testing. Any feed back would be greatly appreciated. Thankyou.

Myocarditis from COVID. Not myocilitis. Sorry I misspelled above.
 

Nikki J

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We commonly see symptoms like yours with post viral syndrome.
do you know the family mutation? How old were your relatives at onset? Of course with a strong family history like yours it is natural to be hyperaware
 

Chapman

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My grandmother was 58.( never effected her limbs , just her respitory I beleive) I was so young i dont remember everything. My father was 39 at onset and had limb onset.(right hand) I do not Know the family mutation. Myself , my siblings , and cousins have never gone to get tested. My grandma was 1988 and my dad was 1990 so I don’t know if they did gene testing then. They did not tell us if they did.
 

Nikki J

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I don’t think they were tested. Sod1 was the first discovered mutation and it was sometime in the early 1990s So I doubt there was anything to test.

twitching is not considered worrisome unless accompanied by weakness I am only saying the following because of this fsmily history However I would in your place pursue this because this may be actionable. The ages make sod1 a distinct possibility for the family mutation. There is a promising drug tofersen that has completed clinical trials and people in sod1 ALS can get it through a special program while we wait for study results and hopefully fda approval. I doubt you have ALS but on the faint faint chance you want to know.

also strongly consider genetic testing. There are issue with it. You need to have life, disability etc insurance in place first. Should you be a sod1 carrier there is a prevention trial for tofersen enrolling.

there are 2 avenues for testing invitae would do a panel for free with your family history Adult Neurodegenerative Disorders

I think but am not sure the prevention trial will test for sod1 Superoxide Dismutase 1 (SOD1) Amyotrophic Lateral Sclerosis (ALS) Study | See If You May Qualify | ATLAS Study

your odds are 50/50 you are not a carrier. It may not be sod1 in the family but I would want to look into these things. Sod1 is about 20% of FALS
 
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