Originally Posted by Annie59

Thank you all for the thoughts. I did ask my family doc and he said try imodium and I pressed my neuro about it and she just said 'just stop your mestinon then.' Now I hope you are as stunned about this as I was but at the same time this is her. I have discussed her with the director of the MGA for my state and she said it souunds like she doesnt know much about MG. She is a neuromuscle doc. I said to her what about my breathing? She is such a disconnected doc.

I am unable to take any drugs that have dry mouth or thirst as a symptoms. I have severe Sjogrens. It is all I can do to drink lots of water everyday to to just keep my eyes and throat from going into pain. The eye pain can be excrutiating. It also affects my lungs making all the soft tissues dry so that is a concern too. If I get very dry from a drug like that it can affect my breathing.

I have, as Allen L suggested broken the pill down. For a pulm test using the mestinon I took a full 30mg over 30 mn and ended up vomiting on the way home. It is so disappointing. When I was first diagnosed with probable MG I using 60mg 3-4 times a day and did not have this. I have elevated parathyroid (secondary hyperparathyroidism) since that became worse again. I think that may have something to do with it.

My meds are limited. I take mestinon and Lortab and tons of Systane for my eyes gel and drops.

I know it is important to ask ones doc but I find that if I have some idea of what others are using it gives me a place to start especially since the dry mouth thing is an issue.

Oh and I do use a probiotic.

Annie59