Annie, forgot to respond to Rheumy issue. I would have seen one by now. I just started to cry on the phone to my friend who I havent seen in years that I am scared of the myositis thing. I think it is real and affecting my body alot. Just stopping the steroids for those few days(the flu I discusssed) ended up with me back in pain yesterday in places I didnt even know were involved like my whole left leg. I had a good rheumy in 2007, the student that was in her last year that bucked her senior docs that didnt treat me well. She tested me for vit D def for the pain was in and was right. I wwrote her a big thank you letter and we bacame good mates. She is gone to Nebraska.

Since Mayo questioned my Sjogrens I havent seen a Rheumy as well all the breathing and muslces weakness was the most urgent. And once the mestinon was starting and all that saliva, fluid increase mestinon gives took care of Sjogrens symtpoms strongly. I had had an appointment with an older kinder rheumy per my request to my internist before Mayo but that person has retired. There is so much ill will towards me there at the university I dont know if any doc there will take anything I say as real. They sure didnt in the last neuro when I told the student there I had pain I felt could be related in my thigh to myositis as the pain got better at the same time. Also with them in the neuro-optho not taking any action at all on the request of my surgeon to see me for my eyes so I can have surgery for cataract to clear up the myositis and see why they still arent moving right ...cant see anything being done there. I dont know who would do that fight. It is beyond me.

Can you imagine how it hurts me to be so unbelieved as someone who went thru a trauma? Someone who the truth is everything to?

Annie59