Rach and AnnieB3 I seem to be in the middle somewhere of yes or no the Neuro-Op (N-O) did something that convinced me which was the prostigmine challenge. With some of the docs leaving me feel beat up and less able to fight back and say "I know what I know and my body is sick with MG or something very much like it!"

The senior doc Dr C in neuro optho who did the red light to show me and her the degree of doubling did not redo that test but left it to someone clear over in pediatric eye area to test. That person did it differently after the injection. That she did it differently and there is was just enough doubt by a couple other docs before that exam set me up so they wouldnt believe me when I said how it DID work. The prostigmine injuection not only cleared my vision excellently but also worked great for my body.

I know that getting this orbital myositis on top of the eye symptoms created a compicated situation. The doc said the inujection would sort that out. But it didnt seem to. If your vision is very compromised by both it seems to me it would take a top N-O to sort it out. What I got was Dr C who at least said you can have MG elsewhere but not in your eyes. But she did reexamine me she let the brand new student fella who is on the the docs who in the on the side of the detractors. I didnt realize this till I called back to say the pain in my face was spreading at which time I even realized the eye tech was even a prob as I she dismissed what I said forcing me to call again and insist I talk to Dr C but was given Dr H the jerk who told me it must be my teeth and then yelled at me to forget the muscle biopsy! I was stunned.

Now that my immune sys is down cause vit D is down the symptoms have started to return in more of my face for the myositis. I want to see Dr C but when I call to ask for this I am told by scheduling meekly 'you can ask and maybe you will." Or when I asked my neuro she said all I needed to do was ask. She doesnt help me at all in that clinic.

I think Dr C is a good neuro optho but now that this other neuros stuff is out there with this last bad appointment I am not sure about that either. Will she stick with the medicine without being swayed? My internist jumped ship which I can only think is from pressure by saying in her notes it is somatic or neuromuscular. Somatic has not been said in my record since 06 and the virologist who was clueless about why I needed to drink so much water put this out there. The water thing was about Sjogrens. I had alot of docs treat me crazy on the water issue but I fought and went to doctor after doctor till one immediately said thats sicca. I had put a name to it before any doc did.

Sorry this got so long. The point is that I am really scared. The university is the only place close to get treated my eye issues cleared up since they are this complicated. I cant afford to travel nor does my duaghter have the ability to go thru a travle situation either to say Kansas City the next closest place with a really good MG center. I want to drive again and this myositis if not gotten under control could it seems affect my eyes longer.

Annie59