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Thread: Save me from myself

  1. #1
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    Default Save me from myself

    Okay I know we all do it and I will admit it, I am uncontrollably doing it now. I just got back from Rheumy appointment and I am now thinking the worst and feeling depressed. I hate seeing the Rheumy, although he is a great and kind doctor he can never tell me anything, due to the nature of this AI business. Nooo not artificial intelligence at least I'd be better off with that extra intelligence Autoimmune. So I definitely have Sgjorgens, but they still can't diagnose me with Lupus or Scleroderma. Although most of the blood test points strongly toward sclerodorma...yet again 3rd time now I've had a positive SCL-70 rating of 8. According to Rheumy that's pretty high to be a false positive but with no skin evidence or organ failure they can only diagnoses me as Undifferentiated Connective Tissue Disorder. He said :You don't want scleroderma" so I'm now to believe out of all my options this one is the worst. Then I start reading on the "net" which you should never do after an appointment The mortality rate isn't great but it's okay if its mild scleroderma. My fear is they aren't gonna figure it out til its no longer mild. Oh well plus today is my day off and I have not had a good one..argument with hubby, waiting for car to get fixed for over 3 hours...I shoulda gone to work. LOL He did some pressure point tests and tested my skin for stiffness, I have rashes blotchy red skin which he thinks could be related to vessels bursting but said he couldn't really feel hardening. He said he doesn't think its a lupus rash. Since the fatigue is still overwhelming he's putting me back on Plaquenil hopefully that will help. But he did say of course "everything I'm saying is fine too me but not too you that's hearing it." That makes me know he understands the dilemma and that sometimes no news really is good news...until my heart stops. :P Oh well I will start thinking less fatalistic.

    Thanks for listening.
    Spanglishqueen AKA Brenda or "B"

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    Hi Brenda,
    Hoping your day got better?? I've had days like that too, I am sure most of us have. It's such an emotional rollercoaster to have these dang AI's. Just know you're not alone, and we're here, we'll listen, we'll understand!
    I am in that not yet dx stage too. Very frustrating. My doc just ordered a ton of blood work and I go tomorrow to get it drawn... here's hoping something shows up to offer evidence that I am not crazy! I hate that docs can make you feel like you are!
    Bless you,
    Deb

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    I am rather conflicted about the "Don't search the internet" bit. On the one hand, I can understand why our doctors tell us that, because we invariably read something that @#!& out of us! But, on the other hand, it is very important that we educate ourselves so that we can make informed decisions, with our doctors, about our health care. So, it is certainly a catch 22....

    I know the limbo of not having a definitive diagnosis can be maddening and there are quite a few members here who are dealing with a diagnosis of Undifferentiated Connective Tissue Disorder. So, you are not alone. Just know that we are here to help you as much as we can and know that we understand what you are going through.

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

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    hi spanglishqueen,

    i know what you mean about rheumy appointments where you come away with the dr. acknowledging your various symptoms and struggles, they nod their head with compassionate understanding, but they can't do anything for us....this is a typical rheumy appointment.....this is life with and AI.

    hope your bad day has turned into a nice evening.
    Phyllis

    share a smile today

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