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  • Wow, I guess It might Be Lupus after all?

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    Old 03-10-2011, 11:48 AM   #1
    IS83
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    Wow, I guess It might Be Lupus after all?

    Wow, I'm new to these boards and reading through all of the Lupus board posts, I have been constantly thinking, "that's me". I've been really sick in one form or another my whole life and in college things got really bad and I ended up with the fibromyalgia label due to inconclusive test results. Now, 8 or so years later, the blood tests have turned positive and my doctor suspects Lupus, which is interesting since when I was diagnosed with fibromyalgia, my doctor at that point thought I had Lupus but my ANA was negative.

    My recent bloodwork came back with an ANA of 1:160 speckled pattern and my Rheumatoid Factor is slightly elevated as well.

    When I get sick, I get really sick. During my childhood every 6 months I'd get strep throat, at 13 atypical pnuemonia that stuck me in the hospital for a week, alternating between bronchitis and pneumonia again while in college, also mono. At 21 I had tonsilitis so bad my doctor made me have surgery immediately as if they were still in, the next bout could kill me, and more bronchitis, lately recurring sinus infections, anemia the usual malaise, constant sore lymph nodes, TMJ, fog, pain, IBS, headaches, stiffness... etc etc etc.

    I am scheduled to see a specialist next week who I believe will run more tests. I'll admit, I'm scared to go through all of this again. I had managed to be healthy and "normal" and control the fibromyalgia. Now that it's possibly not that, I'm sad, angry and confused. I hate that my gp didn't even think to monitor my blood levels and I didn't think enough to ask till recently when I've gotten some new symptons.

    I guess I'm kind of looking for anybody that went through a similar situation? I know that auto-immune conditions take a long time to diagnose correctly, but I never once heard, "keep an eye on that", I just got the fibromyalgia, which would never be cured but wouldn't be progressive.

    Last edited by IS83; 03-10-2011 at 12:47 PM.

     
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    Old 03-11-2011, 12:33 PM   #2
    VeeJ
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    Re: Wow, I guess It might Be Lupus after all?

    IS83, hello. Welcome! In answer to your question, I had problems from early childhood. My drs. (GP's, dermatologists, urologists, gastroenterologists) never suggested a single cause, until my mid-40's. They diagnosed me with Fibro---hung me out to dry, basically. I finally took myself to a metro rheumatologist, and I got answers in less than a month.

    So I don't get it either. But one part of me can fathom some reasons why it took so long. I evolved slowly & stayed basically subacute (despite several major illnesses, no major organ involvement). I never had the most "classic" signs that even a middling dr. should recognize, like malar rash, kidney impairment, "classic" autoantibodies like anti-ds-DNA. (I turned out to have Ro-lupus, which is a tiny subcategory, pretty uncommon.)

    Sill, another part of me was shocked. The photosensitive rash I'd seen at least 7 dermies for turned out to be lupus-specific; how could they all have failed to recognize it? How could the gastroenterologists (many), urologists (several), neurologist, endocrinologist, and GYN's (many) not have seen some pattern? Plus I'd had joint pain and pain along my long bones (arms & legs) since age 13, which should have pointed to rheumatology. I often was anemic, my sed rate was elevated at times, my WBC count was depressed at times. Etc. (Aargh.)

    BUT I'll never know at what point I became "diagnosable"... maybe I wasn't even making autoantibodies until late in the game? (Dunno.)

    Is the dr. you're seeing next week a rheumatologist? Hope so! Post more when you can, OK? Hang tough. With warm wishes, sincerely, Vee

     
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    Old 03-31-2011, 11:34 AM   #3
    Vuitton70
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    Re: Wow, I guess It might Be Lupus after all?

    I could have written these posts myself!!!

    Sick all thru childhood, a host of symptoms that *should* have been put together by Docs all these years but have not.

    I'm still being tested b/c I have all the critera for diagnosis EXCEPT positive ANA + other labs.

    It is SO exhausting and frustrating. I hope at my next appt (in 5 weeks) that the recent, more detailed, labs reveal "something" so I can at least know what is "wrong" finally!!!

    I keep getting the **fibro** thing tossed at me too and I know my body and that is not it. I told my Rheumy last week that I like her and all but I don't "want" to have anything wrong with me to keep coming to visit...I just want to know what the heck is going on!

     
    Old 03-31-2011, 11:38 AM   #4
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    Re: Wow, I guess It might Be Lupus after all?

    Quote:
    Originally Posted by VeeJ View Post
    IS83, hello. Welcome! In answer to your question, I had problems from early childhood. My drs. (GP's, dermatologists, urologists, gastroenterologists) never suggested a single cause, until my mid-40's. They diagnosed me with Fibro---hung me out to dry, basically. I finally took myself to a metro rheumatologist, and I got answers in less than a month.

    So I don't get it either. But one part of me can fathom some reasons why it took so long. I evolved slowly & stayed basically subacute (despite several major illnesses, no major organ involvement). I never had the most "classic" signs that even a middling dr. should recognize, like malar rash, kidney impairment, "classic" autoantibodies like anti-ds-DNA. (I turned out to have Ro-lupus, which is a tiny subcategory, pretty uncommon.)

    Sill, another part of me was shocked. The photosensitive rash I'd seen at least 7 dermies for turned out to be lupus-specific; how could they all have failed to recognize it? How could the gastroenterologists (many), urologists (several), neurologist, endocrinologist, and GYN's (many) not have seen some pattern? Plus I'd had joint pain and pain along my long bones (arms & legs) since age 13, which should have pointed to rheumatology. I often was anemic, my sed rate was elevated at times, my WBC count was depressed at times. Etc. (Aargh.)

    BUT I'll never know at what point I became "diagnosable"... maybe I wasn't even making autoantibodies until late in the game? (Dunno.)

    Is the dr. you're seeing next week a rheumatologist? Hope so! Post more when you can, OK? Hang tough. With warm wishes, sincerely, Vee
    So what is anti-ro and how is that diagnosed? My labs keep coming back border/neg and the rhumey throws her hands up. I do have PA and she keeps going to that or tacking on Fibro (I don't agree with the fibro).

    All of the Lupus symptoms over the past 18 years keep coming back again and again. The photosensitivity never left - what are your photo issues? Mine come up a day or two after being in the sun and I become extrememy exhaused/sore joints and I will have to get into bed and will sleep for hours! I get a rash all over the tops of my feet/arms/torso and if scratched will bleed and itches like crazy.

    I'm super frustrated!!

     
    Old 03-31-2011, 11:42 AM   #5
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    Unhappy Re: Wow, I guess It might Be Lupus after all?

    I just wanted to post an update. I saw a rheumatologist who basically said, it was just the fibro (and nothing was wrong and I should exercise) but had me get some blood tests anyway.

    SSA ro was normal
    SSA la was normal
    sed rate (ESR) was high
    CK was normal
    C3 was normal
    CRP was high
    RF RA Factor was high (in fact it jumped 25 points since a few weeks ago)
    Anti DNA was normal
    Smith Antibody was normal
    Cyclic Citrul was normal

    Now I'm even more confused.

     
    Old 03-31-2011, 11:45 AM   #6
    IS83
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    Re: Wow, I guess It might Be Lupus after all?

    Me too! I just want answers. Doctor just automatically pigeon-hole me as fibromyalgia but my symptons have changed. For the most part, my muscle pain has lessened while my joint paint has increased and I no longer even have the "trigger points" which is bizarre.

     
    Old 03-31-2011, 04:03 PM   #7
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    Re: Wow, I guess It might Be Lupus after all?

    Vuitton70, hi. Anti-Ro is a circulating autoantibody possible in lupus & found via blood tests. Odd thing: the diagnostic criteria list only several autoantibodies, e.g., anti-ds-DNA, anti-Sm, antiphospholipid, anticardiolipin. That's because these are *unique* to lupus & antiphopspholipid syndrome. In contrast, anti-Ro is seen in both lupus and Sjogren's syndrome.

    My rash was targetlike circles. Well, actually, the lesions started as plump red papules which wexpanded into perfect circles, then surther expanded into larger irregular circles, then faded. Didn't hurt, itch, scar or depigment. Appeared on upper arms & back. I became very photosensitive: sun triggered both a new rash & one or more of my usual problems (pain, migraines, fatigue, hair loss, weight loss, GI & urinary problems, anemia, etc.) Final rash diagnosis: SCLE annular form (SCLE = subacute cutaneous lupus erythematosus), diagnosed via deep-punch biopsy with immunofluorescent stain tests.

    I've read that the various lupus rashes tend not to itch (some people here have reported itching, though!), with the exception of lupus urticaria. Have you seen a dermatologist? Or better yet, a dermatopathologist? (That's a dermie who is also a pathologist, thus does his own labwork.)

    Is this the only rheumatologist you've tried? (I tried at least 7 dermies, also multiple gastroenterologists & urologists & GP's, plus one rheumatologist. Last stop: a teaching hospital rheumatologist, then a dermatopathologist, both of whom ran circles around all the other drs. I'd seen.)

    Hope this helps a little. I hope you get yourself "un-stuck" soon. Keep us posted, OK? Sympathetically, Vee

     
    Old 03-31-2011, 04:14 PM   #8
    VeeJ
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    Re: Wow, I guess It might Be Lupus after all?

    IS83, did you ask your rheumatologist if elevated ESR, RF, and CRP are consistent with Fibro? (I can't imagine that they are!)

    Maybe the problem is that you might be a "work in progress"? Meaning that these results may show something "on the rise" but not yet diagnosable, per formal requirements? For example, you've seen how layered & specific the "4 of 11" SLE diagnostic criteria are (they're in the sticky post at the top of the thread list). Well, the criteria for RA are layered, too, and some even have time requirements, like 6 months.

    Drs. rarely share their thinking for patients like us, I suspect. But in your shoes, I'd at least want assurance that the dr. is considering the above SLE and RA criteria, plus anything else that's on the radar. I hope you can get your dr. to speak frankly with you & give you some sense of what she's considering. Let us know what happens next, OK? Sending my best, Vee

     
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