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Thread: Neuro Testing

  1. #11
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    I know, none of us want to get a bad dx, but without one, we are labeled hypochondriacs.
    Most of us where glad to finally get a dx, so we can tell the doc, "I told you, I was sick".
    You know, that something just is not right. Don't give up, go to different docs and be persistent. It is your health that is at stake.

    I hope that you will get your answers soon.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    Tgal,

    I am sorry to hear you are getting the medical runaround. I agree with Melly, don't give up! We have to fight for ourelves b/c the doctors sure aren't fighting for u, so please don't give up!

    Sandy
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



  3. #13
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    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
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    Thanks everyone. I really appreciate the words of support. I keep feeling like I am going in reverse. First trip to the rhumy I was told "Classic Lupus". Next trip I was told "SCLE Lupus because your other bloodwork is not high enough". Couldn't breath so I have to go to the Pulminologist. He found nothing wrong but amazingly when the Rhumy put me on low dose steroids I could breathe again! Yes, I am feeling like I am losing my mind but all of you make me feel less alone.

    Thanks for that

  4. #14
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Tgal,

    I had to learn that getting a proper diagnosis was a battle. A battle against incompetent rheumotologists, a battle with people who said it was all in my head, and a fight with people who are quick to judge someone as a malingerer, just because they don't understand, and are unwilling to learn about Lupus and other autoimmune disorders.

    Too many Dr.'s and rheumo's have tunnel vision. They fixate on one or two test results, and ignore the larger picture. That's why there is a diagnostic criteria. Unfortunately, many health care professionals don't know about it, or they ignore it. I have seen people who have lived with Lupus for years, go to a new rheumo, and have them declare that they did not have Lupus because on that particular day they had a negative result on their ANA test. Well, the ANA can be quite variable, and is not the sole indicator of the disease. Some people can have a negative and still have Lupus. Yet, so many rheumo's only look at this one result, and draw a very flawed conclusion while ignoring other symptoms. And that's just one example out of many unfortunately.

    You know your body, you know yourself. Trust your instincts, be persistent, and be a stubborn pain in the butt if you need to. Don't be afraid to fire a Dr. or specialist who cannot help you, and get as many second, third, and fourth opinons as you need in order to get a definite diagnosis. Don't let anyone try to tell you "it's all in your head". That's a B.S. copout.

    It will take time, effort, and persistence on your part, but you can, and I believe will, get a diagnosis. Be it Lupus, or some other AI disease, you will then be able to start treating the symptoms and get on with living your life.

    You are not losing your mind, and you are not alone.

    Rob

    PS-Vent whenever you feel the need, we'll listen.
    Last edited by rob; 03-20-2010 at 09:58 PM.

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    I so feel your frustration and completely understand. Luckily I found a great neuro, just not sure when I can go back to her due to ins issues. I've gone since Aug 09 with dr's telling me it CAN be one thing when tests come out as nothing or something else, a mixed jumble of symptoms and possible diagnoses. Years previously I've been told nothing is wrong with me over and over and I took that answer as the truth, now I'm ready to find out the truth and move forward, I can't yet.

    hang in there and hope you feel better

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    I have found that neuro's don't want to commit to a firm Dx. Mine says I'm treating you for balance, tremors and lack of coordination - my brain send signals to my hands and they do something else. But he won't come out and say parkinsons; yet he has the pharmacy give me handouts that read parkinsons across the top.

    Well, what I'm trying to say is find one with an open mind. Probably one of the younger ones; mine is ready to retire soon.

    nonna


  7. #17
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    Ya'll are wonderful! Thank you all!

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    Don't give up. I hope you find a doctor that will listen to you. My drs never listen. Sending you prayers.
    But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint. Isaiah 40:31

    Take Care,
    Becky

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    hi tgal,

    don't you dare give up, you know your body, and you know that something is happening and you know that your ability to maintain your present obligations is deminishing.

    Of all of the specialists that you have seen, is there one particular one that appears to have compassion for your plight, and whom you feel would be a good advocate? If so, you could call her/his office and speak with his assistant about getting some help.


    Every time i mention a problem to my rheumy, she sends me to a specialist for tests. She wants to rule out any other possibilities. Plus, they have to really watch us closely with all of the meds that we take. I always go with the attitude that the tests are going to be fine, and that i am going to be told "it must be your lupus"....i hate those words, but i guess it is better than being diagnosed with something else. I take the attitude that now we have a base line for each test, and will know if any changes start to appear.

    So, please don't give up, keep being your best advocate, and keep looking for that dr. whom you can trust...there are some out there. My primary care physician is very good at overseeing everything that i go through. My rheumy is the main physician over my care, but my pcp works with all of the other specialists as well. I finally feel like i have a circle of medical providers around me.

    You see, it can happen, but it has taken me about 14 years to get my care to this level. I have walked out of many drs. offices and picked up my files as i left. You feel like someone is kicking you in the gut, but just remember, they can't keep kicking if you keep going back. Find another one.

    and, by all means, keep coming here to vent....just type all of that stress right out of your your body through your finger tips.
    Phyllis

    share a smile today

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