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lhagsjr

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the results are mixed. This was my 2nd EMG but after undergoing this EMG I can tell you it was really my first. I feel like I can help some people out here by my experience. My first EMG was done by a local Neuro. It lasted 20 minutes and he test 8 muscles for about 1 minute a muscle. His Nerve Test was about the same. 6-8 areas and a minute a piece. All on my right side. Today's EMG was done by an ALS/Neuromuscular University based expert. My advice dont waste your time with the local neuro. The Dr. today tested about 20 muscles and the needle was inside for 3-4 minutes a piece moving it around, asking me to push, flex, etc when the needle was in. All over the body. The same with the nerve test. He told me right away the nerve conduction test was 100% clean. He took the results of the EMG back to his office and said he would come back to talk to me shortly....
His diagnosis at this point, Mild Myopathy. I have to get some special bloodwork done and he expects the bloodwork to come back normal. If in fact it does, a muscle bioposy is next on the list. He didnt get into the specifics of myopathy since there are so many different forms(It is in fact a neuromuscular disease but not a MND). It can be so mild that u take treatments, medicince, etc and can pretty much live a normal life to almost the same problems of ALS. Cant walk, eventually die from respiratory problems. Hopefully he is correct and its the mild form. He did say its evident by the EMG that its definitely myopathy. Every muscle showed the same response. The EMG is really a great test. Those of you who fear ALS and have clean EMGS, I can give you advice also. You dont have it. I spoke with this doc for a long time. He said its crystal clear the response the muscle has when its ALS. He said I had zero evidence of it in any muscle. So those of you who have clean EMGS, look elsewhere. Doesnt mean you are OK. Myopathy doesnt seem like a picnic either. Anyway, I hope I can help others with this post. Good luck to everyone, Ill keep you posted....
 

Al

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Hey Lou. That's not as good as I had hoped for (you too I'm sure) but it sure sounds better than the alternatives. I think you'll do fine. Keep a good attitude it really helps.
AL.
 

ltr

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Thanks for telling us about your experience, it certainly does help. I'm sorry that you had something show up, but very happy you don't have als. You knew that something was going on with your body and your persistence paid off. I'm sure you are relieved to at least know what is going on and that you will have a chance to use treatment. My EMG was nothing like yours. It was quick and maybe two muscles. Guess I'll wait until the neuro decides to do another!

I sense a feeling of relief in your post and hope I am right about that. And about those twitches......I guess they meant something. Mine also seem to stop when I am at the doctor and I have often wondered about myopathy. I am awaiting the results of a muscle biopsy and that will give you a definite diagnosis. Please let us know what the end result is. Leslie
 

Jamiet

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Lou,

As bad as it may sound at this point, we're actually happy for you......that it's not ALS. We never discounted your symtpoms, just didn't believe it was ALS. I am so glad we were correct. Hopefully its mild, we'll say it is and be correct for the second time.

Please feel free to stay with us, we can offer good support and even though it's not a MND, we all have neuromuscular issues and share support.

Rgds,

Jamie
 

vmd

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Lou:

If the diagnosis is mild myopathy, does that mean that it will not progress to a more virulent form? The good news for you is that it is not ALS.

I agree with your assessment of the emg tests. While my emg test was over many muscles and limb areas and the neuro did move the needle around, he certainly did not take as much time as the specialist. The next time I have the emg test, I will probably go to an als specialist.
 

brooksea

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Lou,

Congrats!

Sorry you have some sort of myopathy. Know you were really stressing!

Hope the best for you and hope you can get it under control.

CJ
 

CindyM

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Hi Lou-I am sorry you have this challenge ahead of you. You are doing the smart thing, though, to focus on the positive aspects of it. Stay strong and keep in touch! Regards, Cindy
 

lhagsjr

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Vmd

not sure what the prognosis is for me yet but it doesnt seem like I will have to wait too much longer to know exactly what is going on. Its funny though, not sure if you guys remember but one of my main complaints is my shoudlers both atrophy and subluxation. Well Doc still says no atrophy but if you read about yopathy most sites tell u it effects your shoulders FIRST!

I dont know my outcome but at least i have a plan now...
 

CindyM

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Lou- There you go!:) That's the kind of spunk I admire!:) Cindy
 
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