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Thread: my story

  1. #1
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    Default my story

    I am 36. I have had Thyroid disease forever. I have PCOS. All pregnancy's ended in miscarry. About a year ago my dad passed away. After he died I became very sick. The doctor thought i had fibromyalgia. She then sent me to a rheumatologist. He dx me with Fibro, carpal tunnel, arthritis up my spine and in both knees. My ANA was positive. My CRP was extremely high so he did a sural nerve biopsy for vasculitis, it was negative but abnormal. I have lumps coming up on my legs. Two were biopsy's both negative for vasculitis. The medication i am taking for fibro is Lyrica, which gained me a hefty 40 lbs. Anti inflammatory and for Restless legs. For pain i also take Ultram. (I dont take them unless i absolutely have too.) I take a vitamin D capsul - for the last 4 months. The last doctor visit i pushed him for an answer to tell me what was wrong. He said it was "a lupus related auto immune disease" Im not sure if that is a yes or no. He said he was going to send for my medical records from my cardiologist to see if my heart can handle steroids. I do not have the facial butterfly but if i am outside for a little while my face turns beet red. When i come in it goes away in about an hour. I pray i dont have it but i fear i do. Thanks for listening.

  2. #2
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    Hi Bevi,
    Welcome to the forum. I hope that you don't have this illness, but I do hope that you find out what is going on and they can help you. This is a great site with a lot of wonderful people that comes in here. I hope that you keep posting and let us know what is happening as we all care a lot about you.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

  3. #3
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hi Bevi;
    Welcome to our family. I'm not sure what a "Lupus Related Auto-Immune Disease" is. I'm wondering if he actually meant a "Mixed Connective Tissue Disease"? Mixed connective tissue disease is a term used by some doctors to describe a disorder that has symptoms similar to systemic lupus erythematosus, systemic sclerosis, and polymyositis. Or, perhaps he was referring to Undifferentiated connective tissue disease. This is a condition which affects body organs and muscles in a number of ways, yet the symptoms have not developed to the stage where doctors can easily pinpoint the specific disease.
    There are many family members here who have one or the other diagnosis. Whatever the case, you are most welcome here and we are here to help you as much as we can - whatever your diagnosis may be!

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

  4. #4
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    I'm starting to think the medical professionals are having trouble saying the "L" word.

    At least for me that seems to be the case. It can take a long time to get the answers you need. But hopefully along the way you'll find some things that help with the symptoms.

    This is a wonderful site. Welcome
    Oh look ... a cookie

  5. #5
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    I agree whole heartedly SITC; I think they make up terms to avoid saying the "L" word :?

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

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