Discussions By Condition: Autoimmune Disease

help! I believe I have lupus, but for some reason no one wants to diagnose me with it. what can I do

Posted In: Autoimmune Disease 0 Replies
  • Posted By: Anonymous
  • November 27, 2019
  • 00:53 PM

5yrs ago I was diagnosed with RA even tho my rf was negative. I had a stent that lasted almost 3 wks of extreme swelling, redness and excruciating pain with any movement. went on the typical cocktail of meds yet still continued to have frequent flares over the next 4yrs. last yr, I noticed that I was extremely tired all the time, I could not get enough sleep. also, I was have trouble with concentration (like a severe case of adhd) and I couldn't remember anything!! I started carrying a small notebook with me(that I jokingly called my brain) to jot things down throughout my day. if I didn't write it down, it was lost forever. these symptoms were really affecting my daily life & work. went to pcp, she ran labs...positive ana and ds dna. sent to rheumo. rheumo told me that I was mis diagnosed with RA (sure if was possible) and that I didn't have lupus. he also said it would be highly unlikely that I would have more than 1 auto immune. that's where I completely shut down. I know this is not true. I had fibro, which I was diagnosed with over 15 yrs ago, but always questioned. I felt if they didn't know what was wrong with u, that u were labeled a fribo patient. yes I have multiple trigger points and got huge relief with lyrica, so I may have been wrong. but I don't feel the symptoms im having now can be related to fibro. something has changed, something is different. went to see another rheumo doc, and honestly I think the only part of my conversation she heard was I didn't like the first rheumo doc. when looking online have 9 out of the 11 presentations for lupus, except no butterfly rash and inflammation of heart or lungs(which I don't know how I would know that). can anyone tell me what I should do or if there is something else that maybe causing my symptoms? help plz!!!

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