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Autoimmune Limbo - others?

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Old 09-27-2006, 07:30 AM   #1
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daisymum HB User
Autoimmune Limbo - others?

I feel I'm in limbo. I have had autoimmune stuff occurring for nine years: + ANA and autoimmune hemolytic anemia (sporadic RBC targets, not resulting in significant anemia) diagnosed by a hematologist during pregnancy when the antibodies were discovered during the RH factor screening.

Now, alopecia (I'm getting steroid shots in my scalp). By the way, someone mentioned a burning sensation on their scalp. When I cup my hand over an alopecia bald spot, I get a strong burning sensation. Weird.

Are others experiencing this autoimmune limbo? Normal CBC. Not meeting the lupus criteria, but having autoimmune problems? Not sure what to treat, if anything. Having only fatigue/depression (and an occasional bald spot) as symptoms.

I'll be doing more testing, but I am wondering about others - specifically their length of time with symptoms and diagnosis.

As I mentioned in a previous post, if nothing else pops up, I am considering antidepressants as my treatment

Thanks again, Viv, for suggesting additional blood work.

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Old 01-20-2007, 11:13 AM   #2
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mommygiraffe HB User
Re: Autoimmune Limbo - others?

I'm in medical limbo myself, one rheumy said I had lupus, but she ran out of ideas on what to do next, so she had me get a second opinion at the U of Pa. Rheumy Three ran more bloodwork again, and now says that I have Mixed Connective Tissue Disease, (I have an ANA of 1:1280, and an anti RMP) which is a mix of the symptoms of lupus, scleroderma, and polymyositis sp? I'm learning things all over again, as to what to expect. I've been sick for nine years with this stuff. I also have fibromyalgia and diabetes. First it was just called an un named autoimmune, they couldn't tell me what it was. Then my old rheumy tested me for ankylosing spondylitis,no, then lupus, always coming back to that, and then two years ago he told me I had RA, sero negative. I did Remicade for a while. One day when I went for Remicade the nurse wouldn't give it to me because she thought the acne on my arms was a rash. So I saw Rheumy One's partner because he was busy. She decided that I have lupus after she ran all kinds, 26 vials, of blood work. Now she is out of ideas, as I said. I've tried rituxan as well. Which gave me great labs, but I still feel like crap. So RheumyTwo sent me to Rheumy Three for a second opinion, which turned out to be MCTD. I've had the autoimmune hemolytic anemia too. I'm having a rash on my scalp as well. but it doesn't burn. All of this is to say that you are not, not !!! alone in this. Keep fighting and hoping. I have a husband, a gifted 14yo daughter, and a 9yo High funcioning autistic son. Life is what it is. God is with us through all of it, and we'll come out in the sunshine at some point. In the mean time, I know you are researching like crazy, and hoping. A dx does help in that you have a game plan, but look for control of your symptoms first and foremost. Especially depression, which can come along with an autoimmune. Sending you hugs, and praying, seriously, right now, praying. Hugs, Jen.

Old 01-20-2007, 01:41 PM   #3
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Re: Autoimmune Limbo - others?

Daisymum, I had problems for decades. From age 3 or so, I had a real procession of problems: pneumonia, encephalitis, widespread blistery rashes, sinus infections, chronic fatigue, elevated sed rate & abnormal WBC, low-grade fever, shin pain, joint pain, UTI's, stones, sciatica, migraines, hair breakage, wild & chronic irritable bowel, and irritable bladder. Two problems were flat-out life-threatening: the encephalitis, and at 35, an episode of what *may* have been systemic vasculitis (I'll never know for sure).

Finally two new things appeared that were more "useful": recurrent photosensitive, nonscarring, targetlike rashes on arms & torso; and anemia. Even so, I had those rashes for 8 yrs. with no answers. I tried 5 or 6 dermies, plus gastroenterologists, urologists, and rheumatologists.

I finally took myself to a teaching hospital rheumie who sized up my history & my rashes in mere minutes. He ran more tests (ANA, plus eveything else in the ballpark) & also he sent me to a dermatopathologist for one last skin biopsy, including immunofluorescent stain testing.

Dx: subacute cutaneous lupus (SCLE), negative ANA but positive for anti-Ro. (SCLE was identified as a subset of SLE in the late 1970's, so it wasn't precisely new. My local docs were clueless, though.)

Rx: Plaquenil & very strict sun precautions.

Outcome: VAST improvement, with only one meager sinus infection since Dx. While l still some fatigue & pain, they are minor blips on the radar screen.

Lapsed years: over 4 decades. I was classically "subacute", it appears. My luck...! To be fair, I don't know at what point it became diagnosable as lupus, maybe only with the first big targetlike rashes? But even when those hit, with all that history behind me, locally I was given such sage advice as, "Get RID of your DOG!" ( And fat chance!)

Anyway, yell if anything here catches your eye, OK? All my best, Vee

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