Hi Lois,
I haven't posted much - holiday blues I guess...

I had an appoinment yesterday with the Nurse Practioner at the neurologists office. I had my thymectomy in March and according to the neuro's textbook I should be in remission by now (they forgot to tell him that everyone is different and that while 50% of people go into remission the first year that means 50% don't)...so he thinks that I don't need IVIg anymore and that I should cut back on my Mestinon - take 60mg 3x a day.

If only I were in a remission his advice would be great. Unfortunately, my body is not responding on his timeline. I am two and a half weeks out from IVIg now, I wake up gagging seeral times a night on saliva, have food come out my nose when I eat and sound like my lungs are full of fluid afer I eat. My speech is slurred, my arms feel like they weigh 1000 pounds and walking up a flight of stairs feels a bit like Mount Everest. Meanwhile I am supposed to work full-time and take care of my family...it isn't working for me.

I asked the nurse what the plan was and she said that I should come back in two weeks and they will assess me then to see if things have worsened. So I guess I'll muddle through and see what joys await me next week. Sorry to vent.
Gabe