I saw my neuro. He sure never hurries a person which for me is a big advantage. He wrote a referral to the gastrointestinal doc and my daughter pushed real hard for hm to understand it needed to be next week. I didnt realize she had become so scared about how much worse I am. About this new stuff with my insides, my digestion.

We also got into discussion on my breathing doc. I didnt realize he My great breathing guy was not on his radar. He asked if I had had a pulmonary test. I thought he meant the big pulm stress test (exercise). I told him that that is what confirmed that it WAS my muscles and he wrote a very assertive report and told me I had to see a muscle neuro asap and a very good one which didnt exist at the univeristy at that time. This was interesting to me in that this excluded the pediatric doc I saw last and the MDA doc who was filling in for the missing slot they couldnt find a muslc especialist for. The MDA doc was their MS doc there a very long time.

So this led to a discussion aobut doing a tensilon test now as I had said my pulmo had requested it. My neuro said the best place to do it WAS the university neuro-0ptho department as they have a camera to film it. Like I would ever trust those doc it that department to do that kind of test on me as the they blew the neostimgine one. WE discussed why is hadnt been done/ordered by my pulmo. I said he documented that it needed to be done along with a swallow test in november. He expects people to do their jobs and perhaps not step on toes. I am gonna call him and ask him if he will do this with Dr R my neuro now. And aparently I need to get this neuro his records as he is the most supportive doc and my tests with him are the best black and white proof. He said what if it comes back negative. I said I know what mestinon does for me. It was a miracle to me when I had no expecaation of success or what it woujld do at all. And it made my breathing the most normal in many years. I know it will be positive. Thos he is helpfull doubt like this is hurtful to me. I admit I am more sensitive to this as my reserves are gone with all that is going on. And I dont like it when someone uses the logic why do it(bother with the test) when you are already on mestinon as if this barely living quality of life is in anayway shape or form acceptable. I pray for the day I get IVIG or plasmph. Tears are coming. Gotta go.

Annie59