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  • Undiagnosed Autoimmune Condition- Help? Suggestions

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    Old 10-05-2014, 09:42 AM   #1
    Undiagnosed25
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    Undiagnosed Autoimmune Condition- Help? Suggestions

    I am a 25 year old with an unspecificed/undiagnosed autoimmune condition. I've been having repetitive flares since December 26th of 2013. Each flare seems to be a little different.
    Started with hives out of no where that were symmetrical on my body and were even in my scalp and on my palms and the bottom of my feet. They lasted five weeks.
    Next flare was some time later and included itchy eyes and a rash that would not go away. Fine in texture and dry.
    Next flare was joint pain in my knees that was painful but not debilitating. That was followed by a flare of hives that lasted four weeks and was then followed by widespread muscle weakness in my neck, arms, abdomen and thighs. I was bedridden for 2.5 weeks and in a wheelchair otherwise.
    Followed by a two week break of 'normalcy' that was followed by intense nerve pain in my right foot. That led me to be in a wheelchair for a day and then on crutches for two weeks subsequently.
    That was followed by a violent round of hives that itched profusely two weeks later.
    I'm tired and at my wit's end Someone help me to figure out what's wrong?

     
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    Old 10-05-2014, 09:44 AM   #2
    Undiagnosed25
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    Re: Undiagnosed Autoimmune Condition- Help? Suggestions

    I was tested for Mixed Connective Tissue Disease, Celiac Disease, Sickle Cell, Syphillis, HIV, Inflammatory Myopathy, Chickungunya, Rheumatoid Arthritis, ANA, Sjorgen's Syndrome and they all came back negative. My potassium levels were low. Sodium levels were low. Blood pressure has been sort of low since I've been sick (i have dizzy spells because of it).

    Other symptoms that I experience include the visible swelling of tendons in my wrists. Poor circulation in my arms and hands that sometimes make them fall asleep. Itchy eyes. Joint pain in all joints from fingers to toes. INTENSE fatigue.

    I've been on dexamethasone, Lyrica, methotrexate (made me sick as a dog). Celebrex (Didn't work for my arthritis). Allegra, Zyrtec, Claritin, Claricort, Benadryl NONE OF THEM WORKED FOR MY ITCHY HIVES, Hydroxyzine (Atarax works if taken consitently every four hours and paired with Zantac), Doxepin helps to sleep through the hives. Vimovo assists moderately with pain but barely so sometimes they give me morphine intravenously for nerve pain. Plaquenil (I AM SOOOOO ALLERGIC). Solumedrol shots help. Prednisone withdrawals are so painful for me. Clonazepam, and the list goes on

     
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    Old 10-06-2014, 04:21 PM   #3
    VeeJ
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    Re: Undiagnosed Autoimmune Condition- Help? Suggestions

    Hi & welcome. This sounds truly awful & I'm sorry you're going through it!
    What specialists have you seen? Since you mention ANA and various rheumatological autoimmune conditions, I'm guessing minimally a rheumatologist... but what about a dermatologist or an allergist? (I'm wondering because hives can certainly occur without anyunderlying autoimmune condition.)

    Prior to the first eruption, were you on any meds?

    Did you also have thyroid levels checked? I believe some people with thyroid disorders can get hives.

    What do your hives look like? Are they red & raised, or "wheals" that are visible under the skin surface, or....?

    Someone wrote here fairly recently about an IgG (one of the immunoglobulins) disorder; if I can find that post & the name of that overall group of disorders, I'll post again (it may or may not be germane, I don't really know). Anyway, I sure hope others add more. Meanwhile, sending my best wishes, Vee

     
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    Old 10-07-2014, 04:01 AM   #4
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    Re: Undiagnosed Autoimmune Condition- Help? Suggestions

    P.S. I found what I was trying to remember yesterday, and it turned out to be within endocrinology. In addition to having thyroid levels checked, has adrenal function been checked? I've read the adrenal conditions are very challenging. Since you've been tested for such a huge swath of more-common things, it maybe makes sense that your doctors look into even less common things? I hope others here add some more thoughts. We're only patients, of course, but many of us have been tested up one side & down the other. Hang in there & keep us posted! Warm wishes, V.

     
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