Annie, thanks as always for your support. I am very relieved so we can proceed with treating the disease and not just the symptoms. The mestinon is working but I can feel a slow progressive downward trend. My lows are getting lower and my good periods are not as good. I spoke with the neuro-op and he is going to get me in with the neuromuscular specialist that did the sfemg. They are colleagues at sister hospitals so he has an "in".

The neuro-opt has increased my mestinon so I take 90 mg every 4 hrs.

The neuromuscular specialist and I talked during the SFEMG. He was recommending more aggressive treatment such as possible thymectomy, cellcept, plex and IVIG. I did say I wished for a thymectomy if I was a candidate. I feel it is my best chance for a full remission. I feel I owe it to my daughter to try and give her as normal a life as possible. If she was out on her own already, I might be more conservative.

I do not think I am in good enough shape for surgery. My legs on several occasions have given out on me and I have occasional shortness of breath. I think they will have to do PLEX to get me more stable first.

i think the injury from the last fall has aggrevated the MG. I am still doing PT and I noticed that I cannot do as many reps as when I started a month ago. It only takes 4 reps on the quadraceps for the fatigue to start and by the 12th rep, I can barely lift my leg a couple of inches. I keep going because it has improved the joint injury. Having weak muscle and a weak knee joint makes the stairs even harder to do then before.

They do the endoscopic thymectomy at Jefferson hospital. Has anyone had this done and if so, how long were you out of work?

I think I may need one of the chair/stair lifts. I cannot rely on my legs for the stairs. Some nights I literally have to rely on pulling myself up by my arm on the ballasters. I cannot carry anything up or down stairs. I need both my arms to manuever the stairs. I need to rely on my daughter to carry everything up and down the stair. She does not complain that much about it.

thanks
kathie