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Old 07-28-2003, 07:56 PM   #1
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jlk91762 HB User
Question Lupus? Fibro? How can I get a definitive answer?

My mother has SLE and had it when she was pregnant w/me (positive syphilis test in 1961, later confirmed SLE at Mayo Clinic in the early 70s). I was diagnosed w/fibromyalgia in 1994. Symptoms include severe debilitating muscle and joint pain, bladder and kidney problems(pain and frequent urination), gastrointestinal problems (mainly constipation and poor digestion of food), skin rash when exposed to sun, discoid lesions in my head leaving bald spots, lesions in my ears, on my chest, and now they're popping out all over my face. Face feels like it's on fire. Dermatologist isn't convinced it's lupus-related. ANA panel came back "borderline." The fatigue and headaches are killing me. Cannot work full-time any longer. Feel sick every day. Rheumatologist says it's "fibro and discoid lupus." It seems none of my Drs. can agree on anything and I'm so frustrated. Does this sound reasonable? I had a hysterectomy in March 2003 (after many years of menstrual problems) and I've been experiencing this bad flare of whatever I suffer from ever since. I've never had a flare this bad. Derm is now talking about starting me on Plaquenil. Also, I don't sleep well at night. VERY difficult time falling asleep, and once I do (usually w/the help of Ambien, a sleeping pill), I wake up 4 hrs later in severe pain and cannot fall back asleep. I'm new to this message board and would appreciate any help you can give me. What works to alleviate these symptoms? Should I have more blood tests? What, besides ANA Panel, confirms/rules out SLE? Thanks...

 
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Old 07-28-2003, 08:37 PM   #2
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ginn26 HB User
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I would have your doctor do a ANCA to rule of Wegener's Granulomatosis.

 
Old 08-02-2003, 05:01 PM   #3
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ClareTee HB User
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Hi
If you have discoid lesions then you have some forms of lupus and there may well be systemic symptoms even if there are no antibodies.

I think you need to find a lupus expert rheumatologist who is competent to do a thorough evaluation of all possible causes for your various symptoms
You need to insist on having lupus anti- coagulant and anti -cardiolipin tests done as it sounds as if you might have anti phospholipid syndrome ( APS ).
It sounds as if your mother might have had given the false positive syphilis tests although pregnancy can
affect readings.

This could account for your headaches if they don't respond to normal headache remedies or short course of prednisone.

Plaquenil will help with the skin, arthritis, fatigue and has numerous other side benefits, such as APS prophylaxis, apart from actually modifying the course of the disease.

I hope you get some answers soon

Clare

[This message has been edited by ClareTee (edited 08-02-2003).]

 
Old 08-03-2003, 06:54 PM   #4
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jlk91762 HB User
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Many thanks to Ginn26 and ClareTee for responding to my many questions. I'm seeing the Dr. again next week, and I'll insist on a referral to a different Rheumy and ask about those other blood tests. On Wed night I have to fast for 12 hrs, then go in Thurs a.m. for some type of blood test (the nurse didn't elaborate on the telephone). At least I'm to the point where my Drs. KNOW I'm not making this up. I've been sick for far too long and they can actually SEE the lesions on my face, and the bald spots in my head. The joints in my hands are very swollen as well. I'll keep checking this message board weekly to see any new posts. Feel free to E-mail me any time. Thanks!

 
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