Not really sure what questions I want to ask. Feeling pretty calm after finally being diagnosed and knowing it wasn't all in my head.
After having a recurring rash since June last year, being told by my GP that I had an allergy even though the rash didn't itch but burned when really bad and the antihistamines not working. Feeling like I could sleep for a hundred years, muscles aching, feeling sick, weight lose, ears cracking every time I swallow, bra absolutely killing me, the odd slight swelling of the lips and eyes.
Finally, a doctor at urgent care requested that they test my complement levels. Got a call from my GP telling me that immunology had confirmed SLE. Completely went into panic. However, on my first visit to my first rheumatologist I was told that there was no way I could have SLE. Awful bed side manner (why do some doctors have to be so rude and abrupt) I was so angry.
Luckily for me my gran paid for me to have a private consultation with the help of a local support group for auto immune illnesses. Completely different story. He advised that he didn't think it was SLE but could be HUV. The dermatologist I saw seemed to agree. Even my acupuncturist told me that my body was showing signs that my renal and lymphatic system were not working properly.
Anyway I went to see my 2nd rheumatologist on Monday who had had the good sense to order a skin biopsy as my blood work only showed a very low C3 C4 count. The first rheumatologist had written to me to say that my blood work showed no signs that I had SLE or Vasculitis!! and that I was going to be referred to Immunology because my complement levels remained very low.
The results of the biopsy showed Leukocytoclastic vasculitis. Are there various forms of this disease? As he told me that mine was quite common! Is it auto immune? He is starting me off on steroids and I am being kept under his care for the time being. Not too happy about the steroids is there anything I can do to keep my weight down?
I would really appreciate any advise or thoughts.
Many thanks xx