I am a 31 year old female. In November of 2002, I had a strange red/purple dry spot appear on two of my knuckles of my hand. The red knuckles felt and looked irritated. However, the rash went away, only to come back more and more frequently affecting different knuckes, and even the joints of two of my fingers. Then, about one year ago, I developed urinary urgency with quite a bit of bladder pain. After many sleepless nights from the urinary urgency and painful bladder, the purple spots seemed to appear more and more frequently. When they would appear I would notice a sharp pain in those joints. The urinary issues were finally diagnosed as interstitial cystitis. With the flares I have of interstitial cystitis and the sleepless nights, the purple spots recently seem to be accompanied by an odd sensation that I cannot move my left leg from the calf down and my left hand. Sometimes, it feels as though my left foot and hand are asleep, but more often than not the sensation is that I will not be able to move my left foot, although I can. Frankly, this sensation scares me. It comes and goes, just as the purple spots on my hands do. Most recently, a purple spot has appeared on my left hand where the thumb bone meets the rest of the bones with a few tiny purple splotches above it. I have begun to wonder whether the Interstitial Cystitis is actually something else related to the rest of my symptoms, or it may just set the other symptoms in motion due to the lack of sleep. I am unsure whether to seek a rheumatologist's opinion or a neurologist's opinion. My GP has said the rash looked like dermatomyositis. Although, I only have the immobile sensation on my left side. When I went to the rheumatologist the purple spots had disappeared, so he did not mention dermatomyositis. He said I tested positive for ACL (anti phospholipid); however, a repeat blood test was negative. What does this sound like to you? What specialist should I see? What tests should be run?
A rheumatology referral can be considered if dermatomyositis is considered. This is a disease characterized by a rash as well as muscle weakness. Typically a biopsy is considered to rule out other causes.
Myositis-specifc antibodies, such as the anti-Jo-1 antibody can be helpful in the diagnosis. A test for ANA and rheumatoid factor can be considered to evaluate for lupus and rheumatoid arthritis respectively.
I would consider a second rheumatological opinion as well as a dermatology referral to evaluate the rash. A biopsy can be considered for a more definitive diagnosis.
Followup with your personal physician is essential.
This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.
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