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Conflicting diagnosis concerning lupus
was dx with lupus 30 yrs ago, and been treated 4 it since. moved. docs here have just been monitoring my meds, with occasional round of Prednisone. had 2 see new doc, he said wouldn't treat me without new blood work 2 confirm lupus dx. fine. had f/u visit and he says I DONT HAVE LUPUS!!! says my ra causing all my symptoms, which r numerous. even my muscle aches and sensitivity 2 touch (very painful.) cant wrap my head around that, and don't even know what a next step should b. live in rural area and he's the only specialist avail...(and only by teleconference). HELP!
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I think, my opinion, not based on fact. We take so much medication to reduce the inflammation that blood work will be affected if meds are working. If in a flare blood work will match diagnosis.
I was diagnosed for years with endometriosis and Chrons...both now known as autoimmune.
I had Roseacha and had laser work to remove...now I think that was Lupus mask.
Older diagnosis of Lupus and RA...Lupus Anticoagulation after a stroke in my eye. Cysts on Endocrine system monitored yearly.
I rarely state these to anyone, sounds like hypochondriac but all are confirmed by Blood work. SKIN RASHES MAKE ME CRY.
BE YOUR OWN ADVOCATE!
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2 Reactions@redwhitenblue @paulinybeany @khosini @pamper I’ve noticed that you might wish/want a new doctor. You have some choices: https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members
Mayo Clinic Care Network is a select group of independent health care providers, carefully vetted by Mayo Clinic and granted special access to Mayo's clinical, educational, research and operational knowledge, expertise and resources.
These two organizations focus on autoimmune diseases and have a list of doctors. You can call these two
https://rarediseases.org/living-with-a-rare-disease/
https://rarediseases.info.nih.gov/
Organizations and get information about your disease and ask for some doctors who live somewhat near you.
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2 Reactionstx 4 info. no one in WV. northern OH closest and would b loooong trip. may still do, tho. I=only option I have now is telemedicine via MD. maybe could do initial visit by car, and f/u via telehealth...