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juliesmile

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My husband is 55 and has been experiencing progressive muscle weakness resulting in foot drop, his left leg has significant muscle atrophy, he has twitching which I can feel and see yet he doesn't notice. No pain no tingling no numbness. We've been to neurologist had EMG on left leg which shows significant nerve damage, had right leg done after I noticed unsteadiness, and it shows nerve damage. He has no symptoms in his right leg other than some weakness upon examination. He claims he doesn't feel the weakness at all. So needless to say we had the upper extremeties done and the Dr. was ambiguous, but we got copies of the tests and in his comments and he calls them inconclusive but abnormal.

Maybe I'm being overly concerned, but none of this sounds good. We are now in the hands of a specialist at U.S.C. Dr. named Beydoun. His speciality is Myasthenia Gravis. Will he be qualified to diagnose A.L.S. if that's where we are headed. Is it common for Dr's to dance around the A.L.S. diagnosis? Both neurologists when asked flat out if it could be A.L.S. say they don't think it's A.L.S. but can't rule it out. What else can it be? Is there anyone else out there with similar symptoms and what has your Dr. said?
 

nits

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I think you should show the reports to an ALS specialist. My father was diagnosed with PMA which is ALS for the lower motor neurons, and we saw many doctors and we still got conflicting reports, some said it had to do with spine damage, some said it was ALS, and one guy said its PMA, which sounded the most realistic so thats what we are going by. I wish ALS was something that you could be tested for with a yes or no.

Good Luck!
 

hopingforcure

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Did your husband have a clean EMG? it sounds like he has nerve damage, did he have muscle damage also? ALS is a neuro-muscular disease, and the nerve conduction is usually normal, the muscle part of the test is more conclusive for ruling in or out als. What did the doctor diagnosed.? Hoping
 

juliesmile

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Still so new to terminology

I guess I don't know the answer to that. He does have significant atrophy of left lower leg. I guess that would be considered muscle damage. I went to a link here about how to interpret EMG's but have a lot of vocabulary to look up before that will even be helpful. His EMG of Lower and upper extremeties all were considered "abnormal". I don't know what diagnosed means. Diagnosis? If that's correct, we don't have one.
 

ZenArcher

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Yes, diagnosed = diagnosis.

The other thing is ALS is not neuro-muscular it is neurological. Don't try to read the EMG's yourself. There are trained professionals out there that aren't very good at it. One question, has your husband had any changes in vision or blurry or double vision?
 

juliesmile

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No vision problems

No vision disturbances yet. Thanks for advice on not trying to read EMG. I sat down with it last night and it's daunting. I just wish my Dr. was more forthcoming with me. He just says things like test is not normal etc. In reading his reports last night I did pick up on the fact that when we first say him he hadn't noticed any atrophy. Was that just an oversight on his part, or Has he deteriorated this much in just 6 months because we can see significant atrophy in left lower leg, perhaps 1/3 the size of his right calf. He didn't notice facsiculation at that point, yet I can see and feel them today. Does that happen that fast? I know no one here can tell me yes or no. All I'm asking for is your experiences with these symptoms.
 

crystalkk

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jeff,
just wondering why you asked about vision (blurry or double).
does it mean something?
I am undiagnosed, but i have blurry vision not constantly, but it is getting worst especially when tired.
just curious about your opionion.
 

ZenArcher

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The following is from the Myasthenia Gravis fact sheet:

Symptoms, which vary in type and severity, may include a drooping of one or both eyelids (ptosis), blurred or double vision (diplopia) due to weakness of the muscles that control eye movements, unstable or waddling gait, weakness in arms, hands, fingers, legs, and neck, a change in facial expression, difficulty in swallowing and shortness of breath, and impaired speech (dysarthria).

Taken from: http://www.ninds.nih.gov/disorders/myasthenia_gravis/detail_myasthenia_gravis.htm
 
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