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Has this happened to anyone else

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Old 09-21-2007, 04:27 PM   #1
Join Date: Sep 2007
Location: cheshire
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willow32 HB User
Unhappy Has this happened to anyone else

i have had numerous symptoms of lupus since i was about 14 years where i had a positive ana test and was told that this doesn't mean anything( why bother testing for it then?) I had glandular fever when i was 27, then shortly after got a rash across my face( the butterfly rash). i had a biopsy that came back saying i had SLE. They sent me to a rheumatologist who stated that i did look like i might have discoid lupus however my ana result was negative"GO AWAY" was the next statement i recieved from the rheumatologist. I wasn't given any treatment for the rash but was asked if I would like laser treatment on my face to help with some of the scarring. Thankfully the butterfly rash is now less severe(I look like I have rosy cheeks!)More recently, I am now 32, I have been having more minor problems. I have pains in my arms, legs hands and fingers which feel like severe growing pains, I have become somewhat short of breath and feel 'puffed out' like I have just been running or something and I am completely exhausted(permanently). My auntie has lupus(SLE) and she has suggested that there is another type of lupus test that she under went to get a proper diagnosis and treatment as her lupus is not detectable in a normal lupus blood screening. I know that the symptoms I am experiencing are not severe but I would like a proper diagnosis and some sort of treatment(be it phrmalogical or homeopathic) to aleviate these symptoms as they are affecting my daily life. Is there any point in going back to my GP yet again? And does anybody know what this other test might be?

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Old 09-21-2007, 06:30 PM   #2
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Re: Has this happened to anyone else

Willow, hello. I had problems from childhood on. Like you, I took a big hit in early adolescence, passed off as "shin splints" or "growing pains". All sorts of things thru the years: anemia, joint & long bone pain, chronic GI & urinary problems, weight loss, fatigue, elevated sed rate & depressed WBC, migraines, etc.

In my 40's, I was finally Dx'ed with SCLE = subacute cutaneous lupus erythematosus. SCLE was given its own unique definition only in 1978 or so, so it's the "new kid on the block". It's thought to be an intermediate form. 50% meet 4 or more of the SLE diagnostic criteria, but, even so, many with SCLE remain milder than those with classic SLE. Anti-Ro is the predominant autoantibody. As many as 30% are ANA-negative, because in some people, anti-Ro seemingly "masks" the ANA results. (I was ANA-negative, and this stymied Dx greatly.)

I never had a facial rash but had years of annular (targetlike) nonscarring rashes on my arms & torso, which is one of two defining rashes for SCLE. The other SCLE-specific rash is called psoriasiform, or papulosquamous: that one looks like psoriasis but isn't & can affect any part of the body. People with SCLE are also "eligible" for discoid (scarring) rashes and malar (butterfly) rashes. (I got a single "discoid", on my face, naturally.)

FYI, SCLE favors women of Western European heritage. (That fits me, too.) The median age of Dx is in early 40's, though many have had subacute problems for years. (In this context, "subacute" means basically non-life thretening; it does NOT mean "well".)

You could find more on SCLE by using the search box above. If there's anything here that rings any bells with you, just give a yell, OK? Best wishes, from Vee (P.S. Plaquenil & sun avoidance have helped a lot, but I still have chronic episodes of fatigue & pain.)

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