I second the don't give up!!
I'm not sure how many specialists I've seen now?? A dermatologist, a rheumatologist, a gastro intestinal specialist, an internalist, and finally went to the lupus clinic.
All my blood tests are neg for lupus, I do however have a 5cm mass of inflammed cells in my subcataneous fat, it's a type of panniculitis, that's not a typical lupus panni. I can't be the only one figuring out that there's no such thing as "typical lupus"
I have overlapping symptoms of SLE, my skin literally hurts, my joints are extremely painful, I'm having migraines for the first time in my life, I ended up in the hospital with something that looked like a cross between a stroke and a seizure, I am constantly dizzy, confused, slow in thought process, the exhaustion is unreal, I'm getting panni masses all over the rest of my body, and continue to test negative for everything. I've lost 70lbs in the last year. I'm thankful for the biopsy, but am so tired of we don't know what's wrong with you, why don't you try this Dr.
I am thankful that they have me on the hydroxy-chloriquine. I tried dapsone for a while and it didn't work, and have refused prednisone and all pain killers for my own personal reasons.
I've been fighting since May to find someone who might understand this I wish you luck in your battle, don't give up.