Hi all, I'm new around here. I'm female, in my early 30s, and was diagnosed with Hashimoto's thyroiditis six or so years ago, but that has been well-managed with Synthroid, and I haven't had any significant health issues since then up until now. My random googling brought me to this forum, and though I have not been diagnosed with, well, anything, it seems as if folks in the lupus forum might have experienced something similar to what I'm experiencing. If any of you have had similar issues, let me know-- right now, both me and my growing team of doctors are stumped!
a year ago, I started to have tingling in my hands and feet. That tingling remains but has not progressed. In addition, I have deep aching pretty constantly in my lower legs up to above my knees that gets worse with exercise, and the ache is also sometimes in my shoulders and upper arms. I have blepharitis (swelling of my eyelids, accompanied by styes) and some telangiectasia in my eyelids, too; my eyes sting and feel gritty most of the time. I have the faintest of pink tinges to my nose and cheeks, but it doesn't seem prominent enough to be the malar rash typical of lupus. Most notably, I have raised skin lesions -- like urticaria or palpable purpura -- across my trunk, upper thighs, and occasionally my upper arms. They last for weeks, and as they fade, they look more like petechiae and purpura (they don't blanch when pressed), and they often leave a hyperpigmented spot permanently. The sometimes itch, but not constantly. I've had three biopsies, which showed inflammation and "a subtle vacuolar interface change consistent with connective tissue disease, such as dermatomyositis" (that's from a pathology report, verbatim).
Oh, and I'm tired a lot. My couch is my home when I'm not at work.
I have been tested for everything -- trust me, everything
-- and everything, from ANA to EMG to MRIs has been normal, except for a low C4 complement level, and an at-the-very-lowest-end-of-normal C3 complement level.
My doctors -- an unwieldy team including a neurologist, rheumatologist, dermatologist, ophthalmologist, and internist -- recently ordered a muscle enzyme blood test (results not back yet) and are pushing me for a muscle biopsy.
I know this is a pretty random collection of symptoms, but I'm feeling crappier and crappier, and my doctors (who I trust -- they're wonderful!) are sort of stumped. I live in a pretty small town in the middle of nowhere, so I get that they don't get weird cases a lot. (I honestly think they're having fun with a medical mystery; I'm like the most popular patient in town.)
So, does any of this look familiar to anyone? Or am I slowly going insane?
(And sorry if the lupus forum was the wrong place to post -- I didn't know where else to post about
weird, probable CTD symptoms. Let me know if somewhere else is better to talk about
Post Edited (Elbee) : 4/22/2012 2:51:33 PM (GMT-6)