Mike,

You are definitely lucky to have her! I, sadly, have nobody that close.


My symptoms are definitely back and I am struggling to think how I will even last through the next week of my brand new job - and the weeks it will take to schedule an appointment with a new PCP and neurologist after my health benefits finally kick in sometime next week.

I'm half-tempted to go to the ER of a hospital that has at least one of the 3 neuromuscular specialists in town associated with it, complain of breathing problems and tell them to "consult the neuro because I have MG."

I think (aka know) I need medication adjustments. If the prednisone treatment were working, I wouldn't have had an exacerbation sending me to the hospital - but my neuro (nor the hospital neuro) didn't mention changing my dosing after PLEX or adding mestinon, even though I'm only a month into the azathioprine. Doesn't it sound stupid to not give me mestinon or up my prednisone again to help with symptoms until the aza has time to kick in? I feel like I was set up to be visiting the ER again in 4-8 weeks when the PLEX wears off and my symptoms come back at the same or worse level as before.

I've also thought back and noticed that my appetite has really been depressed since the azathioprine/symptom worsening and I don't know if it is a loop? During PLEX treatments I was eating regularly, not huge meals and fairly low-calorie as it it was the hospital. Since moving, I've noticed that I eat about 3-4 times a day (most days but not all), but I would classify it more as snacking. I have consequently lost weight - even while on prednisone. Sounds stupid, kinda, but could the lack of eating be causing me more symptoms? (I am overweight, so I have plenty of stores to draw from for energy... never thought I'd be concerned instead of happy about weight loss!)

Sorry for my whining and rambling. It helps me to "talk" and at least think someone is out there "listening," otherwise I feel a bit Bridget Jones-y about it (Dying alone in my apartment and not being found until half-eaten by my cat...).

So thank you if you've read this, even if you don't respond!