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was told by another board that someone could help me here

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Old 02-16-2006, 08:17 PM   #1
Join Date: Jan 2006
Location: cheyenne wy usa
Posts: 5
lanhammama HB User
was told by another board that someone could help me here

Hi I am a 27 year old female and have been experiencing alot of things My first symptom was horrible leg pain 4 years ago or so at this time my arthritis profile was positive for esr c-reactive and ASO(strep) since then I have suffered a TIA, Hypertension really bad joint pain sensitivity to the sun and flourescent lights. Have had sores on my tongue rashes and petetchia.
Also have had bumps that resembled pimples but much larger and they are on my scalp as well. Recently i have been so swollen in my hands and legs. Newly diagnosed with Raynauds. My ana and antiphosphillipids were negative but i have some immune defiencies and b-12 and potassium. I have read quite a bit on things because several docs even say it's possibly an auto-immune thing my question is what other less common tests can be done?
I have also had chronic kidney infections(requiring hospitalization) since i was 16. It seems to me if the docs can't figure anything out they just quit!
Also i forgot to mention i have suffered from ibs for years and recently my eyes are so dry and when i swallow it seems as if something is stuck in my throat. I don;t know why all these weird things are happening and why i can't find a doctor who can tell me but maybe you have experienced something like this and you could give me some advice or info that could help.

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Old 02-17-2006, 01:19 AM   #2
Join Date: Mar 2005
Location: london
Posts: 469
zorm HB User
Re: was told by another board that someone could help me here

Dear shannon.

Dry shirmmers test- can test dryness of eyes a test found often used to diagnose lupus and immune conditions.

skin biopsy- i think i need one to but never had it done

inflammatory markers- again these may be like ana not be positive.

white cells

low lymph count indicative of lupus

high white cells can indicate inflammtion

urine tests- proteinura in urine is a sign

b12 deficiency is quite commen in a lot of lupus patients

look at the sticky posts at the top of the board from the american society of rheumatology and st thomas hospital. And find a rheumatologist who will take into account your entire medical history. Keep papers and test from your bloods and hospitalisations. Lupus is not diagnosed on a ny single test it is a persons entire history. ana can take a while to go positive as well as other lupus tests.

Goodluck zorm

Old 02-17-2006, 04:36 AM   #3
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Re: was told by another board that someone could help me here

Hi, Shannon. Zorm just suggested that your read the "sticky posts" (permanent posts) at the top of the thread list. The one about test results contains a source with a long list of specialized tests (blood & other).

ANA is tricky. Plus, the odds of it being positive *differ* among the main groups of lupus. In *systemic* lupus (SLE), it's almost always positive. In the *intermediate* form, subacute cutaneous LE (SCLE), it's only positive 70% or so. In discoid lupus (DLE), maybe only 50%. (And I'm skipping drug-induced and neonatal.)

I ended up with a Dx of SCLE. I was positive for anti-Ro but negative for ANA. Had rashes for many years that looked like raised red welts, then in later years those welts would "bloom" into circles, mainly on upper arms and back; they barely itched and healed without scarring. (There are actually two forms of rashes in the SCLE subset; the non-annular one looks kind of like psoriasis but isn't.)

You have my great sympathy on the IBS! I also had an IBS-like problem, for 25+ years, so awful that I was hospitalized for it several times. Also, as you just wrote, I was anemic, the B-12 kind, and my potassium levels would go way out of whack. I understand that anemia is common in lupus---but that it can also occur due to malabsorption (which IBS could cause or contribute to, I would think).

I've been on Plaquenil for over five years, and it helped immediately. But the hardest thing was getting answers! Even with multiple skin biopsies, none of my suburban drs. "got" my rash or my other problems (low grade fever, migraines, urinary irritability, stones, joint pain, etc.) I suspect, but can't prove, that it was because my ANA was always negative. A teaching hospital a mere 20 miles from my home figured it out immediately.

It too a very long time for my anti-Ro result to turn positive. I suspect in the early years I was never tested for much, *maybe* ANA starting at some point. I never had the brains to ask for copies of my labs---but YOU could ask for yours! It may help to keep your own file.

I concluded afterwards that doctors differ incredibly. I read afterwards that SCLE was first described as a partly unique, partly similar form of lupus only in 1978 or so---so maybe my local docs had never heard of it? And that there are dermatologists who are also pathologists, meaning they do their own labs = "dermatopathologists".

My city rheumie told me I'd scored a "low four" on the "4 of 11" criteria for SLE, but that I had SCLE. I think it was the crietria I *didn't* fit that threw my local docs off. They kept looking for that ANA. My GP kept wanting me to go to Florida, probably so I'd get a malar (facial) rash, but I never got one.

For what this is worth... Give a holler if you want to! Best wishes, Vee

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