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Thread: Diagnosed with Lupus, yet ANA is negative

  1. #1
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    Default Diagnosed with Lupus, yet ANA is negative

    Hi Everyone.

    I was just diagnosed with Lupus by my rheumatologist, yet my primary care does not think I have it because my ANA was negative. I realize you all must be so tired of reading everyone's symptoms, but I really need some answers and would be very grateful for anyone willing to share their thoughts.

    20's

    rashes after being in the sun (started in mid 20's, never was problem before)
    horrible puffy rash on both legs from knees down (went away with hydrocortisol)
    hair began thinning (no patches, just overall thinning out)
    ringing in ears
    carpel tunnel
    muscle fasticulations
    low WBC
    livido reticulitis
    eyebrow and eye lid will puff up like balloon for a day or so then go away
    constant fatigue
    all other blood work fine

    30's

    episodes of tachycardia
    elevated sed rates 44 and 40
    severe peripheral neuropathy (doctors thought it was MS, but MRI of brain was clear)
    (numbness, tingling, incorrect sensations etc)
    severe jerking/twitching
    restless leg and periodic limb movement disorder
    sharp stabbing pain in chin
    central sleep apnea
    bruising easily
    granuloma annulare
    swollen lymph nodes for no obvious reason
    heart burn
    pain in chest that i don't think is related to heartburn
    sudden fevers
    IBS
    joint pain
    muscle spasms
    muscle cramps
    muscle fasticulation
    muscle pain (burning)
    waking up with stiff joints
    feeling of electrical currents running through limbs along with low grade fever
    chronic hives (just about every day)
    extreme fatigue
    brain fog
    rash on face, neck and legs after hot shower
    ANA negative

    40's

    all of the above plus
    malar rash
    swelling of ankle
    tendonitis
    vestibular neurtitis (violent vertigo)
    chronic low grade fevers especially if I go out in sun
    feel like I'm coming down with flu if I push myself even though I have not caught anything.
    Pain in feet becoming severe
    Occular Migraines
    Regular Migraines
    mouth ulcers
    severely dry eyes
    fatigue is now debilitating
    ANA positive speckled 1:40
    elevated CH50


    so long story short, my ANA was negative twice and once it was positive at 1:40. my doctor knows my mother had an autoimmune disease with a much higher ANA titer and he seems to think my malar rash (along with the other symptoms) really points to lupus. he put me on plaquenil 400 mg which I just started.

    I am certain I have some autoimmune disorder and it sure does look like lupus, but my primary care said with two ANA's coming back negative and the other being so weak, she doubted I had it. The subsets were all negative as well. Please help. I don't know what to think. I just want to know what this is, so I can be proactive about it.

    I should also mention that I have been tested for lead, vitamin deficiencies and lymes and that all came back fine.

    Any thoughts on this would be tremendously appreciated. Thanks.

  2. #2
    Join Date
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    Default

    Well, so far no thoughts on my situation. I hope my user name isn't offending people, but it's what I've always called myself long before I ever knew what lupus was. It helps me to have a sense of humor about it.

    I had also posted something in the Introducing section several weeks ago and it said my post had to be approved by a moderator. So far it has not shown up. Maybe I should find another forum.

    All the Best,
    Blotchy

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