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Old 02-01-2010, 04:39 AM   #1
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oneflightdown HB User
Question Neurological Symptoms

Hello, all.

I happen to stumble on this board while doing research. I was looking up some symptoms I've been experiencing for a while and lupus came up in my search, so I decided to learn more.

I was experiencing moments in the sun where I'd get extremely tired--like in those dreams where you're walking up a hill and you can't seem to keep your eyes open. Anyone else had that dream? Anyhow, that's how I felt. I'd actually lie down and take a nap because I couldn't help it. Then, I'd have a rash on my face, over my cheeks and nose. Raised bumps--no itching or pain, though. The rash could stay for a long time and now, it may even pop up without much exposure to the sun.

I don't know if anyone else gets the intense need to sleep when in the sun, but the rash seems to be a symptom of lupus.

Upon further research, I read that lupus can also cause neurological symptoms. Has anyone here experienced this?

I didn't think the many symptoms I had were related--but maybe they are. If this is indeed lupus, I don't know if I can handle the years of tests one must go through before getting better.

Anyhow, I've gone through the stickies, which provided me with extra information that was helpful (a lot of info I've come across has been so vague, which is why I decided to go to a forum where people discuss their personal experiences).

Anyhow, my question is, what types of neurological symptoms have people experienced?

 
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Old 02-01-2010, 01:45 PM   #2
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Re: Neurological Symptoms

Hi & welcome. A facial rash isn't *necessarily* a lupus rash. To determine if a rash is lupus-specific, skin biopsy with immunofluorescent stain tests are often done. Actually, biopsies might not be done readily for *facial* rashes, given the cosmestic considerations? I hope people who've had facial rashes chip in soon.

When you correlate facial rashes to sun AND to other symptoms, like you write, lupus does come to my mind, too, but I'm just a patient, of course.

I had some neuro-like things. I'd sometimes misstep, then teeter/fall. Sit down suddenly, like my legs had given out. Panic attacks that shocked me, because while I wasn't a daredevil, I wasn't a nervous type, either. (Episodes occurred on bridges, planes & subways.) Migraines (ugh). Weird tingling up & down my arms & legs, like little critters flitting back & forth.

My sun problems came on gradually. First, the fatigue you describe. Next, livedo reticularis (lacelike mottling under the skin, a sign of vascular disruption). Then rashes: red rings, on arms & back, that didn't hurt, itch, scar or depigment. It took years but these lesions were finally diagnosed as a less well-known lupus rash called SCLE (subacute cutaneous lupus erythematosus).

Many people in the SCLE "subset" meet the criteria for systemic lupus, but are thought to be less likely to have the toughest problems (brain & kidneys). Most in this gorup test positive for anti-Ro (I did)---whereas I *think* people with lupus malar rashes are more likely to test positive for anti-ds-DNA (and maybe some other autoantibodies, too, I'm not sure).

Anyway, I hope you keep posting. We're good company (I think so, anyway ), and have had a wide variety of things happen. I'm glad you found us. Bye for now, with best wishes, Vee

 
Old 02-01-2010, 05:34 PM   #3
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Re: Neurological Symptoms

Veej always says it so well. I too suffer from SACL. I have lots of rashes and have had many biopsies....3 in the last month. But never biopsy my face.

I experience the extreme fatigue. Some days it is just too difficult to lift my arms. Those days I spend on the couch. It is very common.

I have brain fog but no clinical symptoms of CNS lupus. I'm sure some one chime in on this topic.

Welcome to the group

 
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