Thanks Abby, I will consider Lyme disease. I don't think so since 2 other family members had the same symptoms, one not as bad and one worse than me.

I saw the PA today and my mestinon was increased to 90 Mg 4 times a day. I see the Dr next week at the MDA clinic and he will order a swollow evaluation if no improvement with the increased dose. He wants me to go back on prednisone even though I now have severe osteoporosis. I told him I would see what the Rhuematologist thinks at my first appt for osteoporosis treatment. I am not sure I want to do that. Nothing has been said about trying Imuran or Cellcept. This will be my first time at the MDA clinic and I am not sure what to expect.

Sandy, I hope you feel better soon. I would not discount that some of your symptoms maybe due to the steroid withdrawal or at least making the symptoms worse. I would want to know why they are not trying Cellcept and Imuran and want you back on prednisone.

I am currently being weaned off prednisone and I am experiencing severe headaches, muscle aches, joint pain, and the return of extreme weakness and fatigue. And I am choking all the time again. This is causing me to be extremely depressed. I am not sure how much of these symptoms are due to the return of the MG and how much is due to steroid withdrawal. But I know I never want to go on prednisone again.

When I was on high dose steroids, I felt so good, almost my old self. SO why did they do this tease to make us feel good only to take it away and make us feel so miserable again. It seems cruel. And what is the plan for my remission? No one still has told me how they even plan to try to get me to remission.

Good luck
kathie

I don't think I want to go back on Prednisone again. Like you, I have not gotten a real treatment plan either. I am going to press the issue at my MDA clinic appt next week. I am sorry you are feeling so bad too. It seems like each of us with this disease has gotten very different treatments. I keep researching and educating myself as much as I can. This forum has been very helpful.
Sandy