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Thread: Update!! I have not been on in a long time!!

  1. #1
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    Cool Update!! I have not been on in a long time!!

    Well some of you might remember me from such posts as " anyone ever been fired by there doctor?"
    Thought I would give an update to how I was doing with the syncopes (passing out, fainting). Well they still don't know. After being to 2 different cardiologist an endocrinologist and finally a neurologist there best guess is Autonomic Neuropathy (which i Think they are just saying cause they really dont know) I'm not sure where I left off but I am currently sitting here with 35 staples in my forearm and I just took out 10 stitches from my left eyebrow. I have as many as 4 spells a week and I have cut my self needing countless stitches/staples a broken pelvis and forearm, and a few surgeries over the last 14 months. Last Sept 2012, I cut through my right cheek and severed an artery, I lost 3 liters of blood and I am currently still leaking saliva through a hole in my face. I'm waiting to have a 7 hr surgery to take out my parodied gland and fix the mess. So after saying all that my lupus has remained the same with a few slight flares. Last week I was diagnosed with psoriatic arthritis and today I took me first dose of methotrexate. Other meds include heparine for my APS and factor V Leiden, plaq, pred for the lupus and Addison's disease and t3's, cymbalta, and Celebrex for the arthritis. Feeling a little down after all this but with the love of my hubby and kids I can still hold my head up high!!

    Colleen. (<:

  2. #2
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    Hi Colleen!

    I'm new here, and I don't have a definitive diagnosis yet, but I do sympathize with your neurological problems. I have an undiagnosed seizure disorder. I used to have three or four a week until my doc discovered I had high thyroid antibodies -- Hashimoto's Disease. Before that, I had my thyroid tested, but only the hormone levels. They were all normal. The first doc would not treat me until my levels showed low or high. I found one who would, more consistent with the latest research, and since then, my seizures have stopped (only had one since, and it was just a couple weeks after I started the meds). Now that I have a high ANA, I'm hoping the seizures weren't caused by another problem that is just in remission right now. If they come back...uugh!

    So, all that being said, you might try checking your thyroid antibody levels (if you haven't already). Since Hashi is an autoimmune disease, and you already have others, you might be having neurological problems because of that. The neuro I was seeing told me Hashi would not cause that, but my PCP said otherwise, and, as they say, the proof is in the pudding. Once I got treatment, they stopped -- coincidence or not, I'm THRILLED!

    Good luck, and nice to kind of meet you!

  3. #3
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    I will bring that up to my doctors, any and all ideas are welcome! I'm beginning to think I may just have to live with them, whatever they are.

  4. #4
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    Hi Colleen,
    I remember you well! I remember when you had a bad spill in the bathtub and needed stitches. It's a shame that you keep hurting yourself.
    It doesn't seem at all right that you should have to live with that! Keep pushing for answers.
    BTW - Psoriatic Arthritis is one of my overlaps, too.
    I'm glad that you have come back to your cyber family. You are always welcome here.
    Gentle Hugs,
    Marla

  5. #5
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    Thanks Marla!!

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    hi colleen,
    i too remember you.

    sorry you have such a trying time.....
    but i am glad you made it back to us.

    i hope they find some answers for you.

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