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wright

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I have been reading this forum for quite some time and finally decided to register and ask for a bit of help from you wonderful people. I've seen a few posts that kind of resemble mine but aren't exactly my symptoms so I thought I'd share my story.

I am a 45 year old male that developed some scary symptoms some time ago. It all started with very mild weakness in my shoulder and arm (mainly my bicep). I didn't feel any pain . . . just very mild weakness. It stayed that way for a couple of weeks and then I deveopled some pain in my shoulder and upper arm. After that, the mild weakness started to creep down my forearm and then had some mild weakness in the outer part of my hand (that happened in a matter of a week or so). The pain seems to get worse when I actually use my arm (mainly in my bicep and tricep muscles). If I don't use my arm that much, the pain seems to go away. I know pain isn't a symptom of ALS but could the pain be from overexertion of a weak muscle or does that still not cause pain. Did anyone else feel pain in their limbs at the onset of ALS?
All of that freaked me out so I went to a neurologist. I mentioned ALS (he happens to be a specialist in ALS) and he thought that was premature. He did give me the NCV/EMG test in that arm but everything was normal. At the time I wasn't fasciculating in that arm but I am now. I'm also fasciculating in other parts of my body. They are very infrequent, though. That arm is getting smaller too but of course, like everyone else on here that is worried about ALS, I'm not eating or sleeping very well. Oh, one other thing, my legs seem to get fatigued quicker. I'm not sure about my other arm . . . it seems to be ok, but at times, I think it's getting mildly weak too.
I have read on some websites that ALS is a fast-progressing disease while on other sites I read that it is slow-progressing. Is the progression of my symptoms too fast to be ALS. Does it even seem like I have ALS? Was the NCV/EMG test done too soon to show ALS? Do you have to wait until you start to fasciculate before ALS can be seen on the NCV/EMG test?
Thank you for taking the time for me.
 

olly

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hi wright . my first symptom was muscle spasms in my legs and the spasms can be exstremly painfull, i take baclofen(muscle relaxent)been 8yrs in pain
 

siuska

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waiting for results

I have been symptomatic for about three months (muscle (leg)weakness, spasms, bodywide twitches).
i just had my EMG/NVC done and i believe i flunked them...they menitoned some left leg atrophy but, i don't know if any fibs were caught......i was told that ALS can happen quickly although, everything i've read suggests otherwise...i have trouble with fatique and going down stairs...i can go up fine, it's coming down...in fact that is how i ended up in the hospital-falling down a flight of stairs!

in my experience, this is a waiting game and as they do tests they find out all kinds of stuff you wouldn't have even dreamed of. (they found i had a pituitary tumor and thyroid nodules doing MRI's...fortunately i don't need operations at this time.)

ALS is diagnosed when every other possiblility is ruled out...so there are many tests and neuros take their time because time will ALWAYS tell!

i have had many sleepless nights and panic over this and after three months of cyber stalking neuro sites, i have come to the conclusion that NMD is very difficult to diagnose and to leave the diagnosing to the specialists...i am not a specialist and there are many things that cause weakness, spasms and twitching that i can't know...

as i wait, unemployed (i am a stage-hand and film crew and muscle weakness is dangerous on a stage or set), i have decided to be pro-active and joined an advocacy group for people with ALS...even if it ends up (hopefully) i don't have this disease, i feel i have lived the hell of not knowing and can definitely empathize with all suffering here.
If i can help, i will -myself and others.
 

CindyM

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i have come to the conclusion that NMD is very difficult to diagnose

Well put. Plus I like your coping style! Let's hope that when the answers coem, they will be good ones! Cindy
 
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