AnnieB3, Actually the only thing limiting my mestinon use now was its affects on my bowels which many people with MG have. I have asked around about this and there are meds that are given. When I was first put on Mestinon in July 08 I was on 60mg 3-4 times a day and no problems and it worked very well for my breathing. I could even sing alittle again. I hadnt been able to normally sing since 2002.
I took that level until winter of 08 when the cold improved my symptoms as it always does but my vit D dropped and my parathyroid elevated. My weakness is worse in summer and better in winter. Yes when I first posted here I likely talked about smaller doses but as of mid October when I went on higher levels of hydrocodone for a surgery the bowel problem was fixed as that drug counters the bowel problem. The last week I have taken increased doses of the mestinon as I have been worse and am up to about 200mg per day with nothing but improvement in symptoms. Unfortnately prostigmine still works better over all for me. It didnt affect my speech at a higher level like mestinon did.

I am a member of Sjogrens World. I have been since 2007 aproximately. I was diagnosed with Sjogrens in 2006 at the same place I go for my neuro and lung doc. The blood and lip biopsy were weakly positive. But my dryness was severe. When I went to Mayo for MG eval they disagreed with the Sjogrens diagnosis in 08 winter. So now I just have a diagnosis of sicca. I know that bad Sjogrens can have some of the MG symptoms. But it doesnt get better with mestinon like I do.

I have secondary health issues that interferred with my mestinon tolerance but now I am back to a normal does. The hyperparathyroidism affects my nervous sysytem. It 'amps' it up. I believe that is why when the mestinon hits my nervous system it hits all the bowel nerves and it sends me running to the bathroom. I didnt have the hyperparathyoidism in 08 nor was my neuropathy as bad as it is now, a possible factor. When I took that first dose of mestinon not even knowing what it was or would do I was struggling to breath in the hosp and I fell asleep at last. When the nurse woke me to see how I was I realized how free my breathing was and told her in surprise that I felt near normal! I will never forget that day. I am not a drug person but mestinon is a miracle to me. That was the hospitalization at the university for a myasthenic crisis that was recognized by another neuro my internist had sent me to. It came on during a shower that was hotter than usual during a week when my dad had gone into hospice. Stress plus heat ...........

I have had a thorough workup in the areas you noted. I have ANAs a different times since I started to notice I was weaker around 1999-2000.

Annie59