I have a laundry list of recent issues (M25, 175lb.), but anxiety for ALS is the most troublesome.

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picciottivincen

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I (M25) was born with Hypothyroidism. I say this first because I am sure that my issue is related, but my endocrinologist is adamant it is not and that I need to see a neurologist.

This started months ago in May of this year. I suddenly had a feeling I lost coordination in my foot, what followed was a weak or more of terrible terrible joint and muscle pain in my right foot. Like maybe I had torn a muscle or something? Someone said 'planters foot', so I just assumed I was dehydrated and I hurt my muscles, fair enough right? Over the following few months doing ANY kind of exercise or activity could easily result in terrible muscular pains. My TSH got tested in June, high 9.98, but T3 T4 were normal. So my doctor says we will just monitor it. Well in August I have my first really really good day. No pain, no lose of balance or coordination no nothing. Just a really good day with my coworkers playing disc golf and go karting (in which I kicked their ***es). That night I even helped someone who was in a hit and run change their tire and file a police report on the criminal so that guy could get home. I got home from a long day of work, then a long day with coworkers around midnight, no food in that time either, pretty common for me to push myself to the edge. Following day I drink tons of water and Pedialyte etc. to recover from that activity, but overall I felt great, some twitching in my legs, but still fine.
That night my legs locked up so severely I thought it was a blood clot. I go to the urgent care in the morning, he says 'eat a banana and drink water, this is a Charlie horse. To be fair I had those before, but never ever to this severity. Well over a few months we have altered my thyroid medicine, but my endocrinologist and physical therapist both agree it isn't my thyroid problem and that I need to see a neurologist, but my PCP and the inhouse neurologist (who I never saw, but was just talking to my PCP about my issue) is certain this isn't a neurological issue, because when I set my mind to something, like say picking up my wife, I can still do that, but I cannot do it or any physical exertion for more than a few minutes. I have had terrible muscle rigidity for months, since mid August, but the most recent thyroid change I have finally seen relief of that symptom, but now my issue is terrible and near constant muscle fasciculations, loss of about 25lbs. (from 195 to 170, today was 169.7), and most recently weakness, inability to keep my balance, hard time enunciating my words, having to swallow foods 2-3 times instead of just one, and muscle coordination took over this rigid issue.

Should I push my PCP for an appointment with the Neurologist? I really don't want to waste their time?
Is this something that is found with ALS in some cases?
Is my Endocrinologist (thyroid and hormone specialist) just wrong? My PCP suggested something called Hoffmann Syndrome which ironically causes tongue swelling and all of these muscle cramps, but is directly tied to the thyroid, which my endo comepletely disagrees with.
It is all so stressful, my sister was born with Muscular Dystrophy and I joked with her just 2 months of living her reality is too much for me. I think my fear for ALS comes form years of going with my sister to MD support groups which would often times include people with ALS and such.

I really hope this thread isn't offensive at all, I did read your posts about what is possibly ALS and what isn't, but it is just all so worrisome and it has been months. I don't think I could ever appreciate the true severity of ALS, and if you or a loved one were diagnosed I hope this post isn't demeaning or belittling your experience.

Any comments or help are more than welcome. Thank you for an open place to ask questions.

Vincent
 

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You are best to not play internet doctor, but let your doctors follow a diagnostic path.
Certainly we have not had a PALS experience anything like you describe. ALS is a disease that begins in the brain and paralyses the person.
Good luck with your doctors. Please remember the post you read is our offical position. You noticed in there that what you are experiencing does not line up with ALS and your doctors don't seem to think so either. That's all we can say in response to your descriptions.
 

lgelb

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I don't think you have ALS, but if your hypothyroidism has been less-than-optimally treated, there can certainly be other types of damage over time. Or there could be a condition that the hypothyroidism is secondary to, that is just emerging.

A rheumatology appointment and maybe a second endo opinion couldn't hurt.
 

picciottivincen

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thank you for the idea. I agree with a second op, but getting one endo is hard enough. I will certainly try to get more insight from other professionals.
 

lgelb

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If you have labs, etc. to share, even a telehealth consult might be of value. Specialists of all types are available that way.
 
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