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My Lupus(?) Story

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Old 12-28-2012, 02:17 PM   #1
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Location: W, Wisconsin, USA
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My Lupus(?) Story

My sister was diagnosed with Lupus when she was in treatment for schizophrenia at the age of 16. Butterfly rash, inflamation and I don't know what else. But the doctor that she had at the time was one of many at the healthcare center, and the lupus thing was dropped and never came up again. She's on medication (for schizophrenia) and sleeps 12 hours a day, but has a job and is doing well.

I'm 27 now and have been so tired for all of my life. As I've gotten older, my sleep hygeine has become better, I've lost weight (from 200 to 150) but I still feel tired all the time. I work out, I eat well, and I'm a healthy weight. (Just below a BMI of 25 so I probably could afford to lose a couple pounds).

I did a lot of pushing to get the hypothyroid tests (NOT just TSH) because I thought it had to be a thyroid problem. My TSH leaned towards hypo, but was still within the confines of normal. Finally my gyno did the others, and all came back relatively normal - except TPO (thyroid antibodies) at 90-something were higher than the 45 (?I think) maximum value of the "normal" range. I got a letter saying all good, check.

I kind of despaired. My GP put me on antidepressants and I did those for about two months (selexa made me groggy & sleep constantly... zoloft I might try again, but it also made me very sleepy)

Basically lately... I feel like I'm going crazy. I went to a psychologist last February or so, he said I seemed fine, referred me to my GP. Sometimes I'm afraid I'm going schizophrenic like my sister. The worst part is when I talk to people and I can't concentrate on what they're saying, I can't come up with the words I'm looking for, or lose my train of thought. I remembered that diagnosis of lupus my sister had and wondered if it was at all possible I have that... my grandma was also diabetic (insulin dependent but not sure if type I or II)

The things that sound like me in lupus are severe fatigue, brain fog (awful, awful brain fog), the rash (I only get it sometimes and not as bad as my sister does -- and she gets these rashes on her arms and legs, I think she needs to bring up lupus to her doctor), the Reynaud's syndrome (my toes... are purple. Like permanently. And people are always commenting on my icy hands) and pleurisy (only get this occasionally, when I was younger, I'd call it 'the hole in my chest'. It's really painful to breathe, but it usually doesn't last very long.) Oh and thinning hair!! It's pretty awful to be 27 with a bald spot on top of your head I get pain in my knees, like arthritis, but only when the weather's changing.

So I guess... I feel that I have lupus "light". It's not as bad as some people describe, but the brain fog and forgetfulness are awful. I don't like feeling like I'm going nutters. Sometimes I feel just fine.. but others I feel like I'm losing my marbles!

Interestingly enough, there's some research linking schizophrenia and lupus and I wonder how much my sisters handful of episodes had to do with possible untreated lupus?

Wow that was a long ramble. Thanks to anyone who made it through all that... would like some suggestions if lupus seems likely/possible and how to broach this subject with my GP.

Last edited by EXM; 12-28-2012 at 02:19 PM.

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Old 12-29-2012, 02:12 AM   #2
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Re: My Lupus(?) Story

EXM, hi & welcome. To broach the subject of lupus with my GP, I'd start with the rash, because it's visible and thus can't be waved off.

Have you read the sticky posts (permanent info posts) above the user threads? All could help you some. One contains diagnostic criteria for systemic lupus. Of the 11, you generally must meet 4 or more, but not necessarily all at once (meaning this can happen over time).

You'll see that some criteria require tests that you probably haven't had, like ANA, ANA subtypes (such as anti-ds-DNA, anti-Sm, antiphospholipid, lupus anticoagulant, etc.) Also some criteria are abnormalities on BASIC labs (like low platelet counts, low WBC, hemolytic anemia).

You'll also see 4 criteria that have to do with SKIN. There's another "sticky" only on skin, where you'll find descriptions of lupus-specific rashes. If a rash is proven to be lupus-specific, via biopsy & stain tests, that means you have lupus to some degree; degree can range from "cutaneous-only" to "systemic".

I'll stop here for now. After you browse the stickies, I hope you post again, OK? And when you do, maybe you can describe your rashes? Among us here, I bet we've had most of them! Sending warm wishes, bye for now, Vee

P.S. Re elevated thryoid perioxidase antibodies (TPO), I believe most doctors don't treat for hypothyroidism until thyroid levels (TSH, T3 and T4) are out-of-range. Gee, that must feel like waiting for the other shoe to drop, at least it would to me.

P.P.S. Re any link between schizophrenia and lupus, the only one I've read about, in a very roundabout way, is that various meds can induce a form of lupus in susceptible people, called "Drug-Induced Lupus Erythematosus" (DILE). Certain antipsychotics are on the list of known drug culprits.

But a small percent of SLE patients have CNS involvement that can include flat-out psychosis; that's a severe form of lupus that requires big meds. I don't understand why a doctor would even mention lupus to your sister all those years ago, but not insist on followup with a rheumatologist, or at least the basic screening tests! But maybe that one dr. only mentioned CNS lupus as a possible "differential diagnosis" to schizophrenia, one he'd ruled out? If I were your sister, I'd want that revisited---but I understand that your raising the subject could be traumatic for her... But could she look into her rashes? (Rashes aren't too scary a thing to have investigated.)

Last edited by VeeJ; 12-29-2012 at 02:14 AM. Reason: spelling

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