I just sent my Neurologist a secured email and laid it all out, how my symptoms are getting worse plus I now have new ones. This is stressing me and the stress is a bad feedback loop for MG deterioration. I do not expect a response from him until tomorrow morning, but he will respond.

I didn’t mention this, but I also have fibromyalgia (over 10 years) and the stress of the worsening MG has caused a fibromyalgia flair and I’m in pain. Again, it is a bad stress feedback loop.

Since I’m seronegative MG, diagnosed by a positive SFMG, I don’t know what treatment will be appropriate for me. Is 6 months on Cellcept long enough to judge it’s not working? For sure, IVIG is not effective. Could the prednisone taper be the root of the deterioration? The last dose lowering was 3/16, so it seems unlikely. I’m due to lower again at the end of this week.

Barbi-girl