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Type: Posts; User: Dar

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  1. Replies
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    I'd call the nmber first...see if the info is...

    I'd call the nmber first...see if the info is still good.
  2. Thread: Dizzy Spell?

    by Dar
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    Yes, I've had problems with dizzy spells, An ENT...

    Yes, I've had problems with dizzy spells, An ENT specialist may be a god place to start...if they don't have an answer, they're usually pretty good about pointing you in the right direction from my...
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    It looks like you had an ANA with reflex...in...

    It looks like you had an ANA with reflex...in your case, an ANA titer of at least 1:160 was needed to trigger them to do the further tests you lised below.

    So you know that your titer is at least...
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    I dunno why your doc didn't order the Anti-DS...

    I dunno why your doc didn't order the Anti-DS test, because the Anti-SS (Single Stranded) test just isn't a reliable test.

    Anyway, good luck.
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    Thanks for the welcome back. Sandy - speech...

    Thanks for the welcome back.

    Sandy - speech recognition software is probably what Rob has...unnfortunately, because it also affects my speech and even talking too much can set it off, it wouldn't...
  6. Thread: I think its lupus

    by Dar
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    While histone antibodies are found in the...

    While histone antibodies are found in the majority of those with drug-induce dlupus (DILE), they are also found in many with lupus, too. If you had other autoantibodies that can be seen in lupus or...
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    Forgot to say that I'm back...sorta

    Most of you probably don't know or remember me, but I rn into a lot of problems towards the end of last year and now typing has even become a problem (dystonia secondary to lupus).

    So I'm not...
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    I think there's still a Lupus and Fibro support...

    I think there's still a Lupus and Fibro support group in Grenada, CA (think that's kinda close to you):

    (530) 436-2767
    2020 Timmons Road
    Grenada, CA 96038
  9. Thread: Help

    by Dar
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    Debbie is right about a lot of people with lupus...

    Debbie is right about a lot of people with lupus having antiphospholipid antibodies (aka sticky blood/Hughes Syndrome). Often they'll check for anticardiolipin, lupus anticoagulant, and a...
  10. Yes, I've been following it for a while....

    Yes, I've been following it for a while. Discussed it with my rheumy and he said it'd be unlikely to help with my disease (but I have severe CNS involvement, so not a shocker there).

    Also been...
  11. Thread: Fingers going numb

    by Dar
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    Has your doctor given you exact name for it? As...

    Has your doctor given you exact name for it? As Lucy Lu said, Raynaud's is a common cause for that complaint (changes in temperature, emotional stress and other things can trigger it in fingerd and...
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    If it walks like a duck, talks like a duck... ...

    If it walks like a duck, talks like a duck...

    Seriously, maybe there's some info I'm missing out on like that you have malabsorption problems, that you have had B12 deficiency problems that...
  13. Thread: Weak!!

    by Dar
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    Also, another thing to consider that I totally...

    Also, another thing to consider that I totally missed because I have other lupus problems that could've explained it was anemia. Most people with lupus will have it at one time or another.

    Anyway,...
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    I was the opposite...thought I had lupus...

    I was the opposite...thought I had lupus (although atypical) but could hardly get through the door, much less get a diagnosis for a long time. It wasn't until I found a neurologist who thought I had...
  15. Thread: please help

    by Dar
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    Actually, it sounds like you have a UTI (urinary...

    Actually, it sounds like you have a UTI (urinary tract infection) caused by E. Coli bacteria. UTIs can cause hematuria (blood in the urine). Infections tend to be more common in those with lupus,...
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    I take CellCept for CNS invovlement (brain's...

    I take CellCept for CNS invovlement (brain's messed up). I just can't get off it...the only time they tried I unded up in the ICU for a couple of weeks.

    Been on it about as long as you, I think.
  17. Thread: nerve pain?

    by Dar
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    I know as people with lupus, you expect a certain...

    I know as people with lupus, you expect a certain amount of pain, but pain helps let you know that something is wrong.

    If this pain is severe and not normal for you (the coldness thing is odd,...
  18. Thread: hello all...

    by Dar
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    Multiple autoimmune conditions too, including...

    Multiple autoimmune conditions too, including even a few transient ones (ones that went way on their own never to return, some even before I was evere on any medication).

    And lupus and similar...
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    I am actually taking Neurontin to help with...

    I am actually taking Neurontin to help with movement disorders and stuff, but I was hoping for other treatment options that would help with the disease itself, not just the symptoms. If you have any...
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    CNS lupus - med options?

    Have had it for a little over 10 years now. Prednisone and Imuran won't touch it.

    Cytoxan did well for a while, but lost a lot of it's effectiveness. CellCept helped very well for a few years,...
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    I've heard of several people with lupus who seem...

    I've heard of several people with lupus who seem to react to UV light, even if they don't get the rash. Stores with unprotected fluorescent lights (no plastic covers) seem to be the source of many...
  22. ENA is also known as an ANA with Reflex. ...

    ENA is also known as an ANA with Reflex.

    Basically, if your ANA is positive, then run more specific antibody tests (SSA/SSB, etc.)--what exactly they run can vary from lab to lab, but they're...
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    I have this problem sometimes and was diagnosed...

    I have this problem sometimes and was diagnosed with orthostatic hypotension (meaning it happens when I sit or stand up)...but even with my CNS involvement, I can't even be sure that it's the cause....
  24. Thread: Introduction

    by Dar
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    Introduction

    New to this site and it looked like a nice place.

    As my signature says, I have CNS lupus (about 10 years now). It's not the only thing I've been diagnosed with, but the biggest thorn in my side by...
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