Cool-- I look forward to sharing information. If I remember correctly, you have odd abdominal pain like mine, too. And muscle/limb aching (I have that, too).
Like you, individual lesions last over a week, but I'll usually have at least one or two on my body at all times. They start off looking like angry mosquito bites, but as they heal, they get bigger, less raised, and paler.
As far as blood tests go, my most remarkable abnormal results have been low C3 and low C4.
I'll send you a nice, informative email about my whole experience later this evening after I get off work, so as not to bore everyone here.
Hey guys, Derrie & charmed60, have you guys been to a dermatologist for the rashes? Most of them have seen things you would not believe, and are the ones to see for all things weird with the skin. 'Course, you may end up like me with a "hypersensitive reaction of idiopathic origin", which means "I don't know" in plain talk...
Yup, one of my doctors made me go to a dermatologist for the rash. He actually called and made the appointment for me even though I'd said I'd go "sometime soon" (he wanted an immediate biopsy) and then I get a call from his nurse saying, "You have an appointment in an hour with Dr. Derma."
Originally Posted by jmail
Pushy, they were.
But my biopsies have proven pretty interesting! On biopsy, my rash has an interface dermatitis with mucin that is "identical to lupus or dermatomyositis" but immunofluorescence is negative (very unusual in lupus, more common in DM). But visually, my rash (which looks sort of like urticaria (hives), and like ringworm as it heals) doesn't look like a lupus rash or a DM rash.
"You're so weird," the dermatologist told me with a bit of a smile when I came in to get my stitches out and get the pathology results.
So far, four doctors have declared my medical issue "weird." It's pretty much a point of pride at this point.
eee-yup... "weird", "unusual", "our mystery patient", "that's different"... etc. lol - but medicine is a "practice", and "art", rolled into one. Sort of like a rock & roll band gone wrong...
Hi Jmail! Not yet but am going on Tuesday hopefully for a referral, it's been over a week and a half now and it's showing no signs of going. Got my lupus test results back and everything was negative which of course is a good thing but also frustrating as I just feel like I'm back at square one with no science to back up why I'm feeling this way.
Hey, charmed, don't lose hope! All my antibody tests were negative, but the biopsy proved I had a connective tissue disease, and with a combination of biopsy + low complement + symptoms, my doctors take me quite seriously and have been treating me as best they can.
Originally Posted by charmed60
(PS - I owe you an email, charmed, and I'll be sending one your way today. Crazy busy at work this week, but I met a big deadline yesterday, so I finally have a full weekend off to catch up on my real life.)
That's reassuring thank you Derrie. Just hoping my rash stays around long enough for me to get to a Dermatologist. Can imagine the referral will take months though in this country so I doubt it. Just don't want my doctors thinking it's all in my head. Enjoy your weekend Derrie!
Take pictures and take them with you, along with your notes to the doc appointment. I even took pics of my rashes with a good digital camera, and took the pix on a USB flash card in case they wanted to see full-sized ones, which the dermatologist did. He made copies of some of them and put them in my file. The family doc and hematologist relied upon the photos on my wife's iPhone, which takes pretty good pix, and displays them well enough also...
I have a whole folder on my iPhone just of pictures of my rash in different stages. My doctors loved that I had it, and the iPhone pictures are high enough resolution that they could even zoom in and look closely. One doctor insisted I emailed them all to him.
Originally Posted by jmail
The USB flash card is a good idea. I'm going to do that before I go to the teaching hospital. So keep taking pictures of it at different stages, and make sure you try to get good lighting.
I'm a bit late to this conversation, but count me in for the same sort of rash.
Mine start out a small red dots, then get a silvery, flaky film over the top, and then start to heal from the inside out.
After I complained loud and long back in '99, my PCP biopsied one and freaked out because "it had T-cells".
She guessed that it was lymphomatoid papillosus.
In 2007, my rheumy found patches of scalp psoriasis on my head, so she suspected that the other sores might be a form of psoriasis.
She put me on Plaquenil and Methotrexate, and the sores all went away.
My current rheumy scoffs at the idea of psoriasis. I'm only on plaquenil, and the scalp psoriasis and the little sores have come back.