New here-hello
 

Hi all, I was doing some reading here. Here I am hoping for another positive test as my eyes have tested positive for MG yet the young neuro I have is still resisting. I saw another here who had a positive SFEMG and breathing difficulty yet the neuro said no. It just stuns me and disheartens me that there is so much subjective area in this disease. It's as if which way the wind is blowing on the day you are seen will affect whether you are diagnosed.

The last is my landlords have become fed up with my disabilty (or scared) and are making it difficult for me to stay here. My AC broke and rather than put a 10000BTU back in they put in a 6000BTU which means I end up with abve 80 degrees too often. The wife has an autoimmune disease and she has started to work for the business. She is the only who is handling this and she is being so irrational. I kinda get that this is about her fear that in such a short time she could be just as sick.

Gotta sign off.
Annie59:D

Hi, Annie. There are a lot of us around here who sure do know what you're talking about! I keep telling my neuro that my legs are only very mildly affected, and he keeps testing my legs and telling me he doesn't think I have MG because the tests are only mildly abnormal. He won't test my side and back muscles, which are my main problem, because it's evidently unknown what normal test results for those muscles look like.

It's exactly like the old joke. A guy is on the street corner under a street light searching the ground for his lost watch. His friend says, "I thought you lost it on the other corner!" He says, "Oh, yes, I did, but the light is better over here."

We all wish you the best--hope your landlords and your neuro both start to see reason. Hang in there.

Abby

My eyes tested positive as I have severe double vision and some worse drooping as of a major flare in March. I waited till May for testing at a highly respected clinic in my town. The doc was so positive and said of course this is MG it is obvious. He sent the info to my neuro and said I should be seen in a month. That didnt happen. She is at the teaching hospital an hour away I am primarily treated at. She is young and it occurred to me has no idea how widely respected this clinic is. That place does research And writes text books!! She has acted like it never happened. My most recent talk with her asking her for prostigmine to try she said see some for coping cause this is it. When I tried to protest she whined "but youve had so many tests....."

She is useless. I did get news (sorry if I am repeating myself) that I have gotten an appointment for a second opinion with a differnt doc tho it is at the same place. My internist wanted me to go to Mayo as my records would not need to follow me. She would pick out the best and write an overview.

I have been to Mayo and it was a very every painful experience. I had a neuro ( would mention the name but dont know if thats allowed here) that I wouldnt take a cat to much less wish on anyone else. I did have a GREAT pulmonary doc there that discovered that have paralysis in my diaphragm. Him I love. The neuro up there said his finding meant nothing. Lat year after 2 hospitalization in July I called him and wrote a whole new report. It got things rolling again. I will share his name if anyone wants it. I am forever greatfull to him. My breathing is so poor.

Annie59