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Thread: Same story, different person :/

  1. #1
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    Default Same story, different person :/

    Hello all!!

    I am at a very frustrating point in my diagnosis, whatever the answers may be! I am a 26 yr old, mother of 3 little ones, and just relocated from the US to S.Asia!! In the last couple of years, I have experienced a HORRIBLE reaction to the heat from the sun. I become extremely sick to my stomach, extremely fatigued, and outrageous headaches. Never thought anything of it, kind of started to believe I was imagining it all somehow! We have now been in Asia for about 6 months, and after about a month and a half of being over here I started to really have some major frustrations!

    I started to gain weight (35lbs total now), became extremely fatigued, and just developed an overall feeling of bad health. Like pain in my joints and muscles sooo bad, I cant do my hair for more than a couple minutes at a time. And forget about trying to scrub the shower!!! Anything that requires me to reach above my head even to just try and get a glass off a high shelf is extremely painful and exhausting.

    So I made an appt with my GP to get my thyroid checked.(That was the only problem I suspected at the time) So she ordered a full work up of blood. Results came back with pretty bad neutropenia. Some other numbers were slightly elevated or slightly lowered, but nothing of too great a concern other that all my WBC.(I must point out, I was not ill or sickly in any way of cold or virus at the time around the blood tests) They then sent me to an oncologist and he quickly dismissed my problems, actually even stated I may want to get a referral to see a psychologist! :/ He did ask me to get my blood re-drawn in a few weeks. I actually pushed it off for abt 2 months, because once again, I thought maybe I was imagining all of this. But I finally went in because the most annoying of all my symptoms has been this awful lower left rib pain, in my back. I just wanted to see what I could do to make it go away. My new GP had ordered more labs before this appt just to get the new number. My WBC came up to a 4.1!(previously was at 2.0) So he was not bothered by that at all this time, but what did catch his eye was my ANA showed up positive with a speckled pattern.

    He was very honest and couldnt really tell me anything about this result, not even the ratio, or anything else to go off of. But he did put me in for a referral for a Rhuematologist. (my RF was negative btw...)

    So here I sit, just waiting for my appointment which is next Thursday and just wait for another doctor to scratch his head at my issues and send me off to someone else.
    Please, can anyone tell me if they have been through anything similar? I know symptoms of Autoimmune disorders all kind of mimic eachother, but just thought it would be a good idea to post here, and see what all anyone had to say about it....

  2. #2
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    I should add one of my newest, in the last five months, symptoms has been difficulty catching my breath. along with chest tightening and difficulty yawning (due to not being able to breath deeply). Not sure if that is significant or related to everything else, but thought I would throw that is there as well

  3. #3
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    It takes most of us several years to be diagnosed - and even after that, things change!

    Honestly, docs simply don't know how the immune system works (or doesn't work), so it can be very frustrating to them AND to us to try and get a definite diagnosis. Often, we have to just live with uncertainty and make our peace with it.

    The really important thing is for WHATEVER doctors you have to rule out things like Lymes disease, cancers, thyroid issues, liver disease, etc (including whatever viruses or parasites are endemic to where you live) - and that can take a WHILE. If they rule all that stuff out, then autoimmune disease is what's left - and THEN they can treat it.

    But you do want them to do a thorough job ruling other stuff out, because the treatment for autoimmune disease (suppressing the immune system) can be VERY HARMFUL if you are misdiagnosed and actually have some other kind of thing.

    If they do determine that the root of your problems is autoimmune, the good news is that even if they can't figure out WHAT autoimmune disease it is (Lupus, Sjogren's, Fibro, etc), the treatments for all of them are essentially the same. Then they will try different medications and see what works for you - that can be ANOTHER year or more, trying to find what suits you best.

    In other words - try not to get too fixated on getting a definite diagnosis and treatment very quickly...this whole thing tends to be more of an ongoing process than most medical situations where you go in, get tests, get diagnosed, get treated, and get better. And I imagine moving to SE Asia, where there are all sorts of things you have not been exposed to before, makes it even more complicated.

    in the end, I hope it is NOT Lupus, but something you can actually get rid of (like a virus).

    In any case - be patient and stick with it. Don't take "no" for an answer until you feel better!!!! Many of us have to be very strong advocates for ourselves and see lots of doctors until somebody agrees to help us. No matter WHAT it is, SOMEthing is making you feel rotten, and you shouldn't have to live with that. You just have to find some docs willing to help solve the mystery and try to improve your health - that's the bottom line.

    Best of luck, and let us know what happens!

  4. The Following 2 Users Say Thank You to SleepyInSeattle For This Useful Post:

    readyforanswers (05-17-2013), Saysusie (05-16-2013)

  5. #4
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    Thank you very much for that advice!!!! I completely agree with everything you are saying. I am just so ready to start getting some things ruled out and getting crossed of the list of possible causes. The only answer I keep getting is, “come back in three weeks for follow up blood work...” so I am very much looking forward to this appointment with the rheumatologist I have next week!!!

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