It started almost 5 yrs ago I was at a party with my youngest son and got sick, tired, and weak from standing in the sun my mother looked at me and wanted to know what was wrong with my face (the first time my rash appeared) then everything went dwn hill every bone in my body hurt, head banging, weak, tired, hair coming out for no reason went to md in tears on several occassions my (ex husband) was ****** i could not even get out of bed he logged rolled me out then had to pick me up from work in tears i was unable to push my med cart ( i am not one for crying at all) he knew that something had to b wrong this whatever it is was and still is breaking me dwn i have been dx with lichen plantus aniticus for my severe photosensitivty had a positive ANA when all this started docs did nothing put me on meds but continued to say i didn't have lupus so now 5 yrs later finally got a referral to see rheumy and ANA is now negative....I am so confused in pain and unsure of the visit now I am NOT seeking pain meds or attn.. I HURT!!! my muscles are becoming so weak I just wanna be fixed I have kids and I can't go outside without being covered then I get a million stares any advise anybody please
Take a list of all your concerns with you to the rheumy....copy of labs too. My ANA varies from positive to negative all the time....not unusual. There are more definitive tests that can be done. If you don't get any answers keep going...there are lots of doctors and some know more about autoimmune diseases than others.
Tannie, what does your rash look like & feel like? Where does it appear? Does it itch? Was the Dx made by a dermatologist? Did he do a skin biopsy with immunofluorescent stain tests, or did he just *look* at it and decide? What med were you given?
I also learned that many doctors have a limited understanding of lupus. I saw at least six dermatologists for my recurrent rashes & was told a wide variety of names. (Was CALLED some names, too! ) My dermies didn't even perform the right tests (the stain tests) that would have been the most revealing. Apparently they'd never seen the type of lupus rash I had (called SCLE). I concluded later that they knew only the two best-known lupus rashes = malar & discoid. Problem is, there are at least a dozen more, not as common, but just as real.
So, seeing a rheumie is one path, and seeing a dermie who really knows his/her stuff is another. And you should READ: it helps you ask better questions. Start with the "stickies" at top of the thread list. The one called "Resources" suggests library books (Dr. Wallace's REALLY helped me).
I agree, from what I've read, that ANA isn't the be-all & end-all. For starters, it can fluctuate. Plus, people with more limited lupus (for example, "discoid", sometimes called "skin-only") have negative ANA. And there's even a rare form of systemic lupus called "Ro-lupus", in which ANA stays negative even though a more specific autoantibody called "anti-Ro" is positive.
I have to cover up like crazy, whether people stare or not. I was positive for anti-Ro, and people with that tend to be very photosensitive.
I hope the above gives you more to think & act on. Of course, I'm only a patient, and you need real DOCTORS! Alas, competent drs. don't call us & offer their help. We have to keep trying until someone helps, so I hope you keep at it. Post more when you can, OK? Sending my best wishes, Vee
TY i will request my labs from the first MD I had on Monday to take with me on my appt on Tuesday this will be MD #5 for me and i will make a list b/c when I get to MD I am a ball of nerves from fear of the unknown being a nurse and being on the other side of the table is not fun nothing is explained in detail my brain is like a bowl of mush when I am the patient
Well Ms. VeeJ, the rash on my face is dark across my nose and under my eyes like I am wearing a mask it does not help that I am a Black female they just blow it off like that is how my face looks it doesn't hurt at all I just know it is there but the rashes to everywhere else (arms, neck, n e where the sun hits) they go through changes they are red purple then the welt up and itch like crazy then they turn ashy flaky then leave dark spots that don't go away they gave me topical steriods for it that only turn the new rashes a little shade of dark woohoo I have been wearing these different cover ups I have found it was derm that gave the dx had biospy done 3 yrs ago they were unsure they said it leaned more on the lichen plantus side aniticus because it left dark spots so same biopsy was re-read this year by new guy who said the biospy was very unique and could see why the dx was given he had not seen anything like it and stated he felt it was lichen as well but the kicker is they started me on anti maleria meds for tx of lupus hmmmmm but the meds made my face swell so will let u kno on Tuesday the outcome
Tannie, You've been on a roller-coaster, huh? Here are several other things I found out along the way, for what they may be worth.
Labs are legally required to keep leftover skin from your old skin punches for some years, so it may be possible to have those recalled, if you know who has them, and *tested anew* by some new dr. (I had two old punches & a new one tested by my final dermie.)
I thought I'd had "complete" biopsies done. Not so. My old labs hadn't done those additional stain tests; they'd only done microscopic evaluation. I *think* there are different stains for different rashes, meaning the stains for suspected lichen planus could be entirely different from the stains used on suspected lupus rashes. Meaning, you'd have to ask your drs. to confirm which rashes they'd considered & tested for.
IN CASE YOU HAVE TO RAMP UP, here's a thought to keep in reserve. My last dermie was a "dermatopathologist", with degrees in both dermatology & pathology, meaning a dermie who does his own labwork. I suspect they're rare & most likely found in teaching hospitals. And teaching hospitals probably see more of everything, including the rarer conditions.
The literature says some people do react to antimalarials, but more often to the generic form than to name-brand Plaquenil.
I'm sorry you've felt treated badly. Most drs. I saw, including women drs. I thought would know better, were horribly sarcastic. I think most drs. treat their male patients more civilly than their female patients. BUT we have to try until we get help, so good luck on Tuesday. Please hang tough! Vee