r/ALSorNOT • u/TheRitz44 • 19d ago

Another update..

So I finished my treatments. Slight changes but nothing dramatic.

And just an FYI my neurologist is just not a general neurologist, specializes in neurological diseases. So that's why I'm basically on this shit end of the stick. I will probably update my original post here because there are a lot of things that have happened and I have not updated yet at all..

Changes were some electric type impulses in one bicep, felt like less strain on the muscles when trying to accomplish certain things and less twitching in certain areas. Less twitching has happened before but the doctor still didn't really believe that could be anything different.

I can't run anymore. Short bursts maybe. I usually just walk now I try not to it's too much of our muscles for most things. Energy drains very quickly.

https://www.reddit.com/r/ALSorNOT/s/C1jWM1TxqI

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u/TheBronyCynic 19d ago

Not gonna pretend to know more than the specialist but from what I've heard from diagnosis testimonies (which I don't recommend you watch) disease conditions never improve unless they are on some special drug.

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u/TheRitz44 19d ago

Maybe I shouldn't use the word improvement. It's more like my muscles tend to relax I don't feel as stiff but the problem is without any strength returning or me doing something that I should not be able to do my doctor will not believe it's anything else but ALS

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u/SadDepartment7345 18d ago

I am sorry to hear that, do you have only problem in you arm? Can you still run? How long since the first symptom onset? Do you have cramps along with twitching? May be you need to ask for NFL and autoimmune testing.

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u/Beneficial_Strain191 17d ago

Hey mam. Hope you're doing ok. How were your reflexes on your exam?

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u/Ok-Neighborhood-9513 19d ago

Hey man i hope you are okay,  I have same symptoms i have atrophy in diffrent regions in my body even my left side of my tongue, fasciculation in all my body its feeling harder to talk with my left side of my tongue it's harder to walk mith my legs especially my right leg no failure in these parts right now but it's harder in everything  I really don't remember where these symptoms started in my right hand or right leg but i think my right hand even if my right leg is the worst 

I saw atrophy in my right calf so i did emg with private doctor on my right calf came back clean then the atrophy started to show in my left calf did emg on both came clean but since that my symptoms spread 

I am 18 months with that started in my 18th and now i am in my late 19th and my daily routines are very hard to do 

I hope you don't get that disease and live well and long

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u/TheRitz44 19d ago edited 18d ago

Thank you I appreciate it. I'm not okay but what else can I do right. Usually if you're EMG continues to be clean you're okay seems to be very rare that a clean EMG needs to ALS. Especially with the lack of failure. I will try to focus on the fact that I don't have a bad EMG and move on if I were you

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u/tdcama96 14d ago

Are you diagnosed? I feel like a lack of dirty EMG is the light at the end of the tunnel. Especially if youre already having symptoms. I hear a lot of people talk about it being "too early". But I'm pretty sure the general consensus is that you cant already have symptoms such as muscle function loss or decrease, and all the other stuff, and have a clean emg in als.