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Old 05-03-2006, 02:47 AM   #1
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Lupus?

I was diagnosed with lyme disease approximately 17 years ago based on my history of exposure to ticks and my symptoms. My symptoms were, migratory joint pain with major swelling in my ankles. I also had low-grade fever, fatigue and I had noticed a reddened rash across the bridge of my nose and my cheeks. I thought the rash was probably due to the hormone/skin changes one might experience during/after pregnancy, as I had recently given birth to my youngest daughter. I took about 4 weeks of penicillin and eventually got better. I had a negative lyme titer. I had been tested for MS as well due to tingling sensations in my lower legs which could have been related to the swelling. I had nerve conduction velocities done and the test showed nerve damage in my legs.
Over the years I have had several incidents involving my joints, muscles, tingling sensations, low-grade fever and fatigue. I have also experienced a severe case of shingles on my right side of my back. I continue to have the pain, tingling, and itching in that area off and on in times of stress. After these incidents I went and had a spinal tap to totally rule out lyme disease.
Recently, I have been under a lot of stress and have this multitude of symptoms. This happened about 2 years ago as well and I had my 1st positive ANA panel at that time. My doctor didn't want to give me a diagnosis of lupus until I had another "flare."
So now my symptoms are: fever, joint/muscle pain, shingles, left flank discomfort, occasional pain upon exhaling, major hair loss, headaches (which I seldom have), high blood pressure (anywhere from 140/90 to 170/110), chronic itching, reddened rash on my cheeks/nose, photosensitivity (I break out in a rash on my arms, face, neck area after just 10 minutes exposure), fatigue, and, go figure, depression.
Is there anyone out there that can relate? I went to a specialist when I had my positive ANA panel and he was very condescending and rude that I didn't return. I have told my local physician that if she feels I have lupus I wish for her to manage it. So I had all the lab testing done yesterday and am awaiting the results. Any opinions or information on this? I'd appreciate any imput. Thanks.

Last edited by moderator2; 05-03-2006 at 06:14 AM.

 
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Old 05-03-2006, 08:21 AM   #2
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Re: Lupus?

Hi & welcome. My sense of what you just posted (NOT that I have any medical training---I'm just a patient) is that you could
(1) As soon as your tests come back, get copies of everything. Check to see whether a WHOLE LOT of specialized tests appear, meaning not just the threshhold ANA test. (The ANA alone says something, but alas not something specific enough.)
(2) Ask your dr. what the test results so far mean to her. (It can take months or years for results to be conclusive for SLE, alas.)
(3) Become familiar with the ACR criteria for Dxing systemic lupus. Look for the "sticky post" at the top of the Board here for a brief list of the criteria for Dx'ing *systemic* lupus. (Note that someone can have a *lesser* form of lupus and fit some of these criteria. It takes meeting "4" sometime in your life, not necessarily all at once, to get the Dx of *systemic* lupus.)
(4) Consider/discuss if your rashes can further the diagnostic process. Skin biopsies can be very helpful, if done by an expert, as lupus rashes display very unique characteristics under immunofluorescent testing.

I hope you keep posting, especially as you grapple with all that's going on. Meanwhile, thinking of you & wishing you the best.

Sincerely, Vee (Dx'ed with the SCLE form of lupus, with positive anti-Ro)

 
Old 05-03-2006, 08:39 AM   #3
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Re: Lupus?

Thank you for the provided information. I'll keep you posted. Lorrie

 
Old 05-04-2006, 06:53 AM   #4
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Re: Lupus?

My lab test results are in. My platelets are low at 53,000. My hematocrit was in the 40 % range. My GP is sending me to a rhumie because of my positive ANA and all of my symptoms I have had over the last 17 years. We will just have to see. Would it be out of line to ask about skin tests on my skin due to malar rash?

 
Old 05-04-2006, 08:31 AM   #5
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Re: Lupus?

Lorrie, Good morning. I think skin biopsies are done for suspected lupus mostly when the OTHER results alone (bloodwork, urine tests, etc.) don't yield adequate proof for the Dx to be ruled in or out.

Your new rheumie maybe will be able to get clear enough answers without a skin biopsy, through the more SPECIALIZED blood tests that go beyond ANA, e.g., anti-ds-DNA, anti-Sm, anti-Ro, anti-La, anti-RNP, rheumatoid factor, serum complement levels, ETC. Plus urine tests, etc.

There is a skin test sometimes done, *if* it's needed, called a lupus band test. Skin samples are taken from two areas: sun-exposed (like your arm) and not sun-exposed. In other words, samples DON'T have to come from the rashy area. Again, maybe your dr. will be able to draw conclusions without it.

'Course I'm no doctor...! (Putting it mildly. ) I was compelled to have numerous skin biopsies because the lupus type I had is one of the SLE variants, with "minority" bloodwork findings. So that left my poor skin to provide conclusive results.

I hope you have a great appt. and get much closer to clarity & possible treatment very quickly. Good luck & hang in there, OK? Vee

 
Old 05-05-2006, 10:07 PM   #6
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Re: Lupus?

Thanks VeeJ! I'll keep you posted.

 
Old 05-05-2006, 11:12 PM   #7
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Lorri..Lidocane for Shingles ?

Hi Lorri,
My Mom had Shingles on the bottom of her left foot,she would cry with the intense pain,she is on Pain medication for other problems and it did not even faze the shingles pain.
Her Doctor Prescribed her Lidocane Cream.It was a miracle pain reliever for her shingles.It has an anasthetic {Lidocane I think} in it that absorbes through the skin right to the underlying nerves.
It has been the "ONLY" thing that works for her shingles nerve damage pain.
I do not know if you have tried it,or if people with Lupus can use a medicated skin cream? I don't know enough about the disease yet to know that.But mabe someone here on the Board may know?
I know that the shingles is a horrible thing to have, I seen my Mom suffer with it.
I hope you find relief and answers to your questions.
17 years is a long time to be searching for an answer,I know how frustrated I have become in these past 4 years that I have been searching for answers.The search alone is Exausting.

 
Old 05-05-2006, 11:42 PM   #8
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Re: Lupus?

Yeah, the shingles are very painful. I have actually used the lidocaine/xylocaine cream adhesives which come in 4x6 inch strips and they help some. The effect just doesn't seem to last long enough for what they cost. I would also have to use them more often than prescribed to be pain-free. The nice thing is that there are no narcotics involved. Have you ever been in a room full of people and witnessed someone say they have "fibromyalgia" and the eyes of the others start rolling as if to say, "yeah, you and every other pill-head"? Well, I never use that term as a symptom of my illness because of this reaction I've seen through other's conversations. I also had an MD tell me, regarding someone else, that "doctors only diagnose people with fibromalgia when they can't figure out what the illness is and they begin to assume the person is seeking narcotics." This is so disconcerting! Anyone else experienced such things?

 
Old 05-06-2006, 03:22 PM   #9
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Re: Lupus?

Yeah,I think it is preety sad that when Doctors can not figure out a persons medical problem,they use the patients symptoms to turn on the patient!!!
It is not the patients falt that there illness is complex.

My Aunt has Fibromialgia,and I see her suffer with the pain daily.

I think that illnesses with pain causes a person to feel very much alone because others can not actually "see " the pain,so they just don't comprehend the magnitude it has on ones life.

I'm sorry the Lidocain did not help you,that was the only suggestion I knew too

I sure hope you find some relief soon.

Have w onderful day.

 
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