I was in the step down unit this time (2 weeks ago it was the ICU). My pulmonologist wnts me to be sure to go to the ED if my breathing gets worse again, but for now it is sucky, but stable. Since neuro isn't going to treat and I'm not getting worse there is no reason to be in the hospital.

I have my appoint at Hopkins in a week, but I don't know what they are going to say to do...I'm on IVIG every 3 weeks and on 60-90mg Mestinon every 4 hours. If they want to put me on immuunosuppressants, I'll have to get the J-tube placed again---I currently have a G-tube and am eating some mushy stuff, but I'm refluxing and aspirating still a little

My case is not as clear cut b/c I had a cervical disc slip and have some neurological residual from the resultant cord compression...before they figure out I had the disk compressing the cord, they told me I had MS. I also have asthma which kicks in b/c I'm chronically (but intermittantly) aspirating. My SFEMG was mildly abnormal as was the modulating Abs (binding Abs were negative). I've just send off the antiMUSK Ab test.

The current arguemtn against MG is that I had a period a couple yearrs ago when my heart rate was irregular and my blood pressure was bouncing around...which suggests an autonomic nervous system problem (which can be seen in people with cervical cord injury, so I don't really understand why they find that odd). My breathing problems "could" be from my cervical cord issues, but then there would be no reason for it getting better and worse at times. My swallowing problems cannot be from the cervical cord stuff

So now I "probably" have MG, but the neuro doesn't feel comfortable treating me with immunosuppressants. This all has been going on in some form for 15 years (the breathing and swallowing part for 5 years), so you think I'd be used to it...or someone would figure it out.