OK, here is the deal...
First off, I want to thank David, AL, Cindy and whoever else came up with the idea of this board and whoever is responsible for keeping it running. If I didnt have this board I dont know what I would have done. The support I got last night/today for just an appointment was awesome. Plenty of Private Messages, etc. You guys know who u are and u are awesome...
Now, the appointment. The appointment was scheduled with the Director of Neuromuscular Division of Jefferson Hospital which is a pretty big institution here in Philadelphia. When I walked in I spoke to 2 neuros at first. One a resident and the other was a student. The resident did the exam. This exam was VERY VERY thorough, even more extensive then the one at the ALS clinic. Of course, strength was great. Ive never complained of strength problems throughout this process(now a year long). Walk on tippy toes, heals, etc. all OK. They looked at my tongue and the student said, it looks a little uneven but the resident said yes a very little uneven but Im not concerned because its not furry? He said if there is atrophy it has a furry look to it? They saw 1 fasiculation while in the office, which is the first time that happened. The reflexes were slightly brisk. Finally, the atrophy dispute. The resident did not think so. I showed him places were I see atrophy. Again, he wasnt concerned.
Finally, after about a 45 minute exam, the man came in. The director. He did about a 15 minute exam himself. Again, no atrophy in his mind. Not concerned at all. He is going to his EMG on next Wednesday(Halloween) to put my mind at ease. Then a follow up appointment the week after that. Things move quick with this practice. This will be my 3rd EMG since March. I dont know how I feel about the EMG. I really dont. I dont see a positive coming out of it. I mean if something horrible shows up now, of course that is devastating(Last one was in June). If nothing shows up, where do I go from here? This will pretty much spell the end of the doctors if this EMG comes back basically clean like the other 2. I do have a question, do any PALS who have limb onset have clean EMGS?
So thats were I stand, kind of confused. Of course I hope the EMG comes out OK again but my question is, where to come from there? look at other options other then neuromuscular? should i try to lyme route?
Oh, and they prescribed Neurontin for the twitching. Is anyone else taking this for twitching?