← Return to Research for rare autoimmune diseases

Discussion

Research for rare autoimmune diseases

Autoimmune Diseases | Last Active: Jan 13 5:32am | Replies (7)

Comment receiving replies
@zebra2022

I already had the sjogrens along with the ra factor, plus r.a.. I also have leukocytoclastic vasculitis as well. I never had hep c so I know my cryo was not from that. I never had very many infections (can't remember the last one, let alone being sick). I didn't know there was an issue until I went to the ER for a migraine and was admitted for heart failure. Spent a total of 19 days in the hospital. When they diagnosed me through a biopsy in my kidney. I had so many procedures and tests done during that time it would make your head spin.
I'm just looking for answers and my doctor's seem to want to pass me off to someone else because they don't know.

Jump to this post


Replies to "I already had the sjogrens along with the ra factor, plus r.a.. I also have leukocytoclastic..."

@zebra2022 I certainly understand and respect your need for more information. I needed it also. Are you being seen at a university or comprehensive medical center? I have learned so much from my doctor at the university med center.
You can also call
https://rarediseases.info.nih.gov/ Genetic and Rare Diseases. Ask if they can give you a name of a doctor in your area/state. See what other resources they have.
https://health.usnews.com/best-hospitals/rankings/rheumatology You can also check out this list of best hospitals.
Can you try these and then let me know what you find?