Hi,

They can find a specific one. If you wanted to, you could chase it down. They just don't have the expertise where you are. This is not uncommon. I am in an area that has relatively good medical care. I was diagnosed with amyopathic dermatomyositis via a biopsy and lab work. A specific diagnosis is a mixed blessing if you happen to not fit the profile in the way your disease presents itself.

The amyopathic dermatomyositis diagnosis, though precise, does not completely fit my situation and symptoms. But there is not a durn thing I can do about that unless I want to travel to John Hopkins, etc. And then MAYBE they could help. I am working full time and I can't deal with that mess when it might not even help. Sound a bit cynical? I plead guilty.

I left my rheumatologist who was good enough to recognize and get me diagnosed, because my main symptom, after awhile, was neuropathic and/or muscle pain and fatigue. The fatigue she validated and even offered to write me up for disability. I wasn't ready for that.

But she consistently told me that according to her information pain was not part of my disease. That made me cry every time I left her office, so I had to stop going to her. I now understand that there is very little real agreement on these diseases and very few doctors that have treated many patients.

The big (most respected) neurologist at UNC told me "You have a rare disease and you are in a subset of a subset of people with that rare disease. If you go to John Hopkins, and you find a doctor who has treated more than 5 or 6 people with the strain of the disease that you have, that person will be a true expert."

That really discouraged me from going because I would just rather deal with it myself even though it is very hard.

I gradually tapered myself off the methotrexate and prednisone. I wanted to know what was the disease and what was side effects!!!!!!! I take a ton of supplements and I I just started taking Lyrica to see if it will help. It was prescribed three times already, but I filled it and didn't take it because of fear from the bad experiences with side effects!! Now I am into my second week of the Lyrica. No help yet but no terrible side effects either. Wish me luck. I'm off work so I can deal with pain a bit easier. Before now I have been relying on 800 mg ibuprofen and then 1/2 a vicodin for breakthrough pain. But since I do not want to become dependent or deal with doctors about it anymore the pain remains undercontrolled.

Take care.