Hello everyone! So we went to our appointment wednesday and spent SIX hours there! Four with the dr's themselves, I was so incredibly nervous beforehand.. It is the university ALS clinic, but they were really really nice, and spent a lot of time with one dr and then they had another dr come in as well..
The good, amazing wonderful news- No ALS! They even did an emg right then and there (I have two clean emgs from other neuros), but since I have this weakness in my hands with mild atrophy, it seems like something should be on the emg, well thankfully this emg was clean too! Done by the ALS dr himself...
the not as good news was - they were completely baffled.. they had no idea what's going on, they thought I sound like I have Guillian barre/cidp, but my reflexes are intact and the clean emgs, and normal LP goes against all of that.. I was numb to temperature, pin prick and my vibration sense was off too.. so large and small fiber neuropathy.. No one seemed to have a clue about my tongue and speech getting slurred as the day goes on..
So, we left with the great news it wasn't ALS, thank God!!! However, it was kind of unnerving to see these specialist so baffled.. I am a little upset that they didn't run the Musk test.. they sent a bunch of labs to mayo, but said that I didn't seem to have MG..
Kage- that is exactly how my neuro exams are-when they do repeatitive strength test on me I can't even resist them in the end - and I end up almost unable to use the muscles they tested for the rest of the day and am VERY sore the next day (i'm 31 I should be able to do simple strength tests!!!)
with my tongue, I think what's the harm in running the Musk tests, especially with them not having a clue.. I'm going to be an atypical case of something, though they just dont' know what it is..

I am going to get a skin/nerve biopsy here soon, and they are probably goign to set up an IVIG trial here in the coming weeks. I just pray I get better with it!!
So scarey having the specialist be stumped.. A trip to mayo may be in order.. Have any of you been treated in Houston? I have heard there are great neuromuscular guys in Methodist and Baylor.. Hope everyone is well!