I am a new user, but I am just so incredibly done with trying to get this (or any!) diagnosis. I hope you all have some insight because I'm exhausted and angry and disabled right now.
I just got back from yet another ER visit for odd symptoms and severe pain and this one was just the absolute worst case of de-humanizing degradation and no help at all. If anyone here has any insight on how to handle things if your typical tests are normal (ie: not lupus/rheumatoid/etc aimed testing, just WBC, urinalysis) and no one will test for more, I'd really appreciate the insight.
I've seen a rheumatologist who was with me for all of 15 minutes and didn't do any bloodwork or care to listen to any of my history. I don't know what the extent of my bloodwork has been - only one doc has done any bloodwork with the suspicion of auto-immune source and he literally told me that based on old bloodwork I "couldn't have lupus or anything." So my bloodwork is normal, but it's only normal bloodwork.
I have pretty profound raynaud's. I have had my first malar rash this week. I have odd skin issues including but not limited to: puffy white sores on joint areas that shear off and turn into huge, angry, wet, red, blistery sores, Tiny, almost zit like dots appearing in groups around my body that turn into scaly patches or angry, wet, red sores (explained tonight as a portion of erythema nodosum? I don't know), sensitivity to all kinds of soaps and detergents (angry red rash), raised bumps on my legs that turn into nasty bruising (erythema nodosum, I presume), livedo reticularis (like a textbook picture) all over - hands, forearms, thighs, shins, feet, and oozing sores in and around my nose. The nose issues are accompanied by almost constant red, sore throat and frequently nose. I have photosensitivity, rash wise, but also with general fatigue and malaise. My joint and muscle pain is debilitating. I have chest pain with breath and exertion. I have kidney pain as though someone is sticking a knife in my right and sometimes left side. I can't relax enough to pee most of the time, and sometimes it's cloudy.
I have migraines and all the associated aura symptoms - visual auras with scotomas, sensory auras, dysphasic auras and hemiplegic. My neurologic symptoms are troubling and difficult to address because they come and go like all else but are quite crippling.
I'm pretty done with being told I need a psychiatric evaluation.