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undiagnosed illness

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Old 01-10-2009, 04:12 PM   #1
Join Date: Jan 2009
Location: East Hampton, NY, USA
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maudem HB User
undiagnosed illness

I am new to the site. I need some emotional support from anyone who has experienced what I have been going through. For over 12 years I have developed a rash whenever I get sick. It's totally debilitating and puts me in bed for several days. Two weeks ago I got a sinus infection, then got the rash. The rash went away but I have been bedridden ever since. I'm extremely weak and exhausted, have a stiff neck, feel fluish though no fever and am now getting depressed and fearful. I have never been in bed sick for more than 4 days in my life and feel like I will never get well again. I went to 2 rheumatologists who sent out extensive bloodwork to try to figure out what is wrong with me. They think I have some sort of autoimmune disorder but don't know which one. I don't have any stiffness of the joints. Has anyone had similar symptons and gotten better? Will I ever feel like myself again?

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Old 01-27-2009, 07:34 AM   #2
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Re: undiagnosed illness

Sorry no one responded earlier! Anyway---a big hi & a great big welcome to you. I'm just a (dumb) patient but am curious to hear more about a few things you wrote.

YOUR RASHES: Where on your body? Do YOU notice any pattern, like times of year, after sun, etc.? What do they look like? What do they feel like (itch, burn, etc.)? When they fade, do they depigment &/or scar? Have they changed over time?

WHAT DRS. HAVE SEEN YOUR RASHES? Have you seen a dermatologist or dermatopathologist ( = a dermie who also is certified in pathology & thus does his/her own labwork)? In lupus, a deep-punch biopsy can reveal changes that suggest lupus; then further stain tests can light up in a way seen ONLY in lupus. The two levels of testing combined can thus "prove" it's some form of a lupus rash, but not necessarily the specific kind: discoid vs. subacute cutaneous vs. acute (facial butterfly) vs. tumid vs. ETC.---but knowing for sure that it's a lupus rash is extremely valuable info.

BLOODWORK DONE BY TWO RHEUMIES YOU'VE SEEN SO FAR: Did you get copies? It would be interesting to know how far each went. For example, some drs. run a wide range of autoantibody tests, while others run just the threshhold ANA test, then slow down if ANA comes back negative.

For some people, the first approach can make more sense, I *think*, based on what I've read & on my own experience. (It did for me, because I ended up being Dxed with an intermediate, variant form of lupus that has considerably lower odds of having a positive ANA than does classic systemic lupus. I suspect my local drs. were waiting for my ANA to go positive, which to my knowledge, it never did & never would have! WHO KNEW???!)

HAVE YOU READ REPUTABLE AUTHORS: There's a real wealth of info in hardcovers available in your library or bookstore. Best bets: Dr. Daniel Wallace, or Dr. Robert Lahita. Actually, you should go for it & browse BOTH.

Also, given your geographical area, you could probably find specialists who both practice in the "big city" (a teaching hospital affiliation is a "plus") but have a second office out your way, where they have hours 1-2 days a week. My SIL did that; she gained a top-flight, up-to-date rheumie while cutting her commute.

I hope you post more soon. Bye for now, with best wishes, Vee

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