Confused diagnosis

[Mehbluedog]

I have read this forum and the stickies for months. I had self-diagnosed ALS! I have had two lumbar Laminectomy surgeries for nerve impingement over the past three years. I have atrophy and weakness in both lower legs. I can't walk on heels or toes. I lose balance when stopping a walk. My surgeon said no worries, not ALS, just nerve damage from back. However, I have had persistent twitching as well. I finally decided to see a neuro. I went to an ALS specialist in St. Petersburg Florida. After physical exams and history, he tells me he doesn't think I have ALS. Then comes the EMG/NCD. I think was the initials. After both tests he says he's perplexed. He said if he went by electronic tests he would have said ALS, however I am "not weak enough". Then he says that a very few people are born with a disorder of the nerves that mimics ALS. Basically the muscles are being enervated all the time. He says the atrophy and weakness in lower legs are directly related to my previous nerve impingement/damage and will not get better. Has anyone ever heard of a similar diagnosis. Feel like I am back at square one. Thank you.

 

[Txgirl]

I would go to another doctor for a second opinion.

 

[Mehbluedog]

Well I travelled to St. Petersburg because this is supposed to be a premier ALS clinic in Florida. My wife now tells me that he said I have EMG Disease. Which he said is a very rare occurrence and makes the EMG and NCS near useless in diagnosing ALS. He said he did not feel I have ALS because I don't have progressive weakness and atrophy that can't be tied directly back to my lumbar nerve damage. He wants me back in 3 months. Guess I will go back at this point. I guess I was looking for something definite and I know now that's not usually the case!thanks