Hello @lily2013 and I'd also like to welcome you to Mayo Connect.

I really admire your perseverance and diligence to seeking an answer to this unique disorder. You have worked hard and been a good advocate for yourself in seeking out a diagnosis. I can only imagine how frustrated you must feel after working so hard to find an answer and still having the same problem.

John has offered some good suggestions. Since you have been down so many other roads seeking a diagnosis, a trip to a Mayo facility might certainly be worth a try.

Just as a thought, have any other family members had any autoimmune disorders, like Lupus, Rheumatoid Arthritis? Also, when this problem started 2 years ago, had you recently moved, been in an accident, or had some other life changing event?

We wish you well as you continue to seek an answer. We hope that another Member can post with you about a similar problem. In the meantime, we will seek to support and encourage you.

Teresa