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Thread: New and confused!!!

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    Post New and confused!!!

    Hi everyone,

    Everything started suddenly in the beginning of December. My first symptoms were Raynaud's, fatigue, a low grade fever, and flu-like aches. Several other symptoms surfaced. After the first round of blood work, I was diagnosed with hypothyroidism/Hashimoto's and I began treatment (Armour Thyroid). My ANA, Rheumatoid factor, SSA, SSB all came back negative.

    Then the migraines started 5 weeks ago. I have severe migraines daily with sensitivity to light and developed a rash across my face (malar or rosacea?) as well as mouth ulcers. The rheumatologist ran the Avise SLE+2.0 test. Here are the following findings:

    ANA Immunofluorescence - Negative
    ANA ELISA - 18 Units (<20 normal)
    EC4d - 22 (<12 normal)
    Anti-Cardiolipin IgM - 56 (<20 normal)
    Anti-Phosphatidylserine/Prothrombin 31 - (<30 normal)
    Vitamin D was low as well

    Avise's result = Equivocal because ANA too close to cutoff value

    Dr prescribed daily baby aspirin for antiphospholipid findings and vitamin d supplementation and referred me to dermatologist for rash and neurologist for migraines. If either of the other specialists believe those symptoms are lupus related, then he will start Plaquenil. Unfortunately my neurology appt is not until May!

    My question is should I ask my rheumy if I can start the Plaquenil? It seems that I have a lot of things pointing to Lupus, but no definitive answer. Do the ANA levels build up over time? I don't want to take something needlessly, but I don't want to suffer needlessly either.

    TIA!

    (*Not looking for anyone to diagnose, just what other people have experienced)

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    I would suggest going to see a rheumatologist ....
    they are the specialist that deals with our type of problems.

    I would also talk to a chemist about folic acid supplements.
    please do not take them without referring to some one.

    the mouth ulcers can be from many things .....
    but considering the medications you are on,
    and your diagnosed conditions ....
    I would suggest asking questions about folic acid.

    it is possible to have auto immune diseases like hashimoto's and lupus ....
    and still have a negative ana.

    unfortunately it is common to have to wait 3 or 4 months to see a lot of specialists ....
    so please do not feel disheartened.

    please keep us informed as to your progress.
    I am hoping all progresses smoothly, and you find a suitable balance of medication.
    When you're stressed, You eat Ice cream, Cake, Chocolate & Sweets. Why? Because stressed spelled backwards is DESSERTS.

  3. The Following User Says Thank You to steve.b For This Useful Post:

    Saysusie (01-29-2015)

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    Thank you for your response! I am currently working with a rheumatologist….perhaps I should get a second opinion? My folic acid was tested and was actually higher than the normal range. I am finding all of this waiting to be the hardest part when my life feels like it's passing before me.

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    It may be possible that you are suffering from some form of auto-immune disorder. Unfortunately, many of the symptoms resemble one another and they may change over the course of time. It is partly for this reason that AI issues are so difficult to diagnose and the entire process can sometimes take up to a year before you receive a definitive diagnosis. For many, a concrete diagnosis is never made. What is important is that you have a doctor who is willing to treat your symptoms regardless of your diagnosis. Again, many of the treatments for AI issues are also the same. It is better to treat the symptoms and, hopefully, prevent them from worsening and/or prevent others from appearing.
    Therefore, it is probably a good idea to take Steve's suggestions and talk to your doctors about possible treatments and ask questions about your symptoms.
    I wish you the very best.

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    Hi,
    Vit D seems to be low in many Hypothyroidism patients. I have been on supplemental D for yrs they check it now and then.
    Hashimotos, is an AI.
    I agree with Steve and Saysuie...see a rheumy. I personally would never had started plaquenil w/o a skin biopsy that said I had Lupus. I am now on plaquenil. The medication itself can cause many SE.
    Read up on your thyroid condition, the thyroid effects every tissue in our body.
    Take care of yourself.
    Heron

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    Saysusie (02-10-2015)

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