Getting Scary... Think the Doctors are not Heading in the Right Direction?
 

I've been passed round between different specialist for about 6 yrs without anyone trying very hard to do more than refer me to somebody else. It started a couple of months after I had a brain aneurysm clipped though I would not be surprised if there is no connection between the two events. I woke up feeling like I was coming down with the flu. My upper right arm was rigid and hurt terribly. A few hrs later my left upper arm started becoming sore and then rigid. Next the muscles in my right hip started hurting but those muscles started to relax after an hour. The next day my hip felt fine, but my upper arms remained rigid and very painful. It slowly improved, but it took a few months for me to have enough movement to be able to wash my hair. Since then I have had flare ups. After a flare up I have less/movement use of my upper arms. Sometimes I would get the muscles hurting around my hips at the same time, sometimes not. I also have mild "digestive problems" during many flare ups.
This week I had a flare up with a new problem that scared the heck out of me. My arms, hips , and Diaphragm were affected. Currently the exercise tolerance of my arms is very poor, my hips hurt, and it feels like I have an ace bandage wrapped tightly around my lower ribs.
I have a history of multiple brain aneurysms and grave's disease. I have fatigue issues and poor exercise tolerance especially with my arms. I'm getting scared this is gonna be the death of me. The doctors now are saying that they think the issue with my arms is some type of puzzling "mechanical" issue that is not related to any others symptoms. I don't think they are right.
Please let me know if feel that you may know might be going on with me. I am am the point that I'm not above throwing a fit to get any tests done that might lead to a diagnosis. I really think it might be an autoimmune condition. They run in the family.

It would seem that a rheumatologist should have been/should be on your list of docs? What were the results of any A/I testing? especially celiac?
also, your arm issues may be TOS...related to but not caused exclusively by, positioning from surgery.

Thank you for giving me a few ideas that I could suggest my doctor consider as possible causes pabb. I looked up Thoracic Outlet Syndrome and it really seemed to be a real possibility. I just started seeing a rheumatologist and am hoping that I have better luck than I had with seeing my neurologist.