OK I am posting tons of threads but I am just trying to figure out what is going on......For about 6 months now I have just been sore in my muscles (legs and arms), getting little red spots in my mouth that are not ulcers (dont hurt), canker sores are common with me so I never think anything about it, this summer I started getting a rash whenever I was in the sun that is red bumps and really itchy ~ DRIVES ME NUTS!, now my hair is falling out like crazy :'( and my skin is flaky on my scalp and arms, not to mention I'm itchy more on areas that see the sun even when there isnt a rash. As you will see I was paranoid I had HIV or something but that was a negative test ~ Should I get Lupus tested? I am anemic, and my MPV was slightly low ~ WBC was normal % but my neutrophils were high in number??? I was also diagnosed with boarderline HYPERthyroid which is slowly getting worse, and anemia...... Any ideas???
Hi. In your shoes, I would see either a dermatologist or a rheumatologist, and maybe just cut to the chase & say right up front what your concern is. There are no doubt things OTHER than lupus that could cause your issues, but that's only for a doctor (or doctors) to say...
Have you read the "sticky post" that spells out the "4 of 11" diagnostic criteria for SLE? It's at the top of the thread list. People must meet 4, but not necessarily all at once, to support a Dx of SLE. There are several other kinds of lupus, though, in which you may meet fewer than 4: DLE (discoid) and SCLE (subacute cutaneous) and DILE (drug-induced).
Another thought: are you on any meds for borderline hypothyroidism? Or any other meds that might be causing rashes or some photosensitivity? You should take your Rx'es & OTC's (if any) with you to your appt.
FYI, most lupus rashes do NOT itch. I *think* hypothyroidism can dry the skin, but I'm not sure to what degree.
Anemia alone can cause some weird sensations, as well as miserable fatigue, I think. I had tingling "creepy-crawly" sensations that stopped after my blood counts improved.
I hope you keep posting & that you can get in to see a competent dr. soon. Good luck! Sincerely, Vee
You had "creepy - crawly" sensations with what? That is exactly what my skin feels like! I was freaking out thinking I had scabies or something haha ~ but my photosensitive rash does itch so its good to hear that it dosent. And the symptoms were before the meds, which I just started so I am hoping everything gets better ~ I cant figure out the hair loss thing though :'(
Hi. Glad you wrote back. Got to thinking... It may make more sense for you to see a rheumie FIRST. The rheumie could recommend a dermie if you need one, one who's good at the MEDICAL stuff, NOT into mostly cosmetic procedures. I didn't realize how many dermies in my area had shifted their practices to cosmetic procedures, and I ended up wasting a lot of time.
I had flitting, tingling sensations running up & down my arms. My blood tests had footnotes on them stating that "unexplained neuropsychiatric problems" were possible with low B-12 and Folate. The tingling felt "neuro" to me. I actually suspected for awhile that I had mild MS...
But my worst RASHES were on my arms, so maybe they were a factor, too? Dunno. Took me years to find out my rash was SCLE (subacute cutaneous lupus erythematosus). I finally turned positive for anti-Ro, which is the autoantibody seen the most often with this specific rash & this "style" of lupus. I never had a facial rash.
I lost hair, too, especially along the hairline. Hair loss is common in lupus, but also possible in other conditions, of course.
I just heard quite a tale from someone I know. She'd had photosensitive rashes for 20 years & hadn't gotten answers. I don't know how hard she pursued answers, though. She kept going out into sun, including tropical vactions. Then suddenly her muscles hurt so much that she ground to a halt. Her Dx was dermatomyositis. My only point here is that lupus is probably only one possibility. But with rashes COUPLED with systemic problems (anemia, hair loss, pain, etc.), it just makes sense to start with a rheumatologist. I hope you get a handle on all this quickly. Best wishes & good luck! Bye for now. Sincerely, Vee