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Thread: Can't get a diagnosis

  1. #11
    Junior Member
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    Thanks, I bookmarked the the links. I've pretty much been left to my own devices to try to make sense of it and yeah you're right, speculating isn't something that's getting me anywhere. It hasn't helped there's no plan, it's not like my dr has said to me ok we're going to do this, then onto that, or even told me what the process is. I'm still reeling from go for this test, see this specialist, I think it might be this and next week about face and it might be something else, I've got no idea where this is taking me.

    I might ask a friend who works in healthcare if she can recomend a doctor and maybe if she can come with me for support, I always come away from appointments feeling deflated.

  2. #12
    Quote Originally Posted by UpLate View Post
    I might ask a friend who works in healthcare if she can recomend a doctor and maybe if she can come with me for support, I always come away from appointments feeling deflated.
    This sounds like a good plan to me. It always helps to have two sets of ears at an appointment.

    Your doctors need to communicate and confer with each other, and of course with you...specialists do no one any good unless their findings can be incorporated into a unified treatment plan, so keep insisting that you need to know what's wrong, and what to do about it.

  3. #13
    Senior Member Katilea's Avatar
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    I hope you get a diagnosis, I was treated for MS at first and it wasn't that, by time they worked it out I was already in wheelchair. So I'm afraid I have very little trust in doctors and health professionals.

    Most of what I've achieved I have done through my own research and intensive physio routine.

  4. #14
    Hi Katilea. Misdiagnosis of MS is so frequent and there are so many conditions that mimic it...if it's something you wouldn't mind sharing, I'd be really interested in knowing what the condition was that was missed for so long, and how you were finally diagnosed.

  5. #15
    Senior Member Katilea's Avatar
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    Hi

    The thing is I was born with my thyroid not working which has caused a variety of problems in the past, I had read it could cause Ataxia and asked the Neuro in a letter, his reply was that it was possible but cos it was so rare it was unlikely!

    They continued to watch to see how my symptoms developed for 2 years, eventually I got a full bloods panel which showed my T3 was dangerously low and TSH (thyroid Stimulating Hormone in brain) was sky high as it was trying to get my thyroid to produce more but my thyroid has never worked from birth! I have been on thyroxine since 23 months old.

    I did full story on my blog once:
    http://katilea.wordpress.com/2010/07...e-next-corner/

    Years later when I was been assessed for a communication aid the assessor had to get medical info from my Neuro on it said Cerebellar Ataxia caused by Chronic Hypothyroidism! I was never told I was right and only found this information out by accident! (when the guy sent me a copy of report he was submitting to panel for funding for the Lightwriter).

    I was also told Ataxia was just a symptom years back and meant I be abit wobbly on my feet but when they got the thyroid levels right I would return to 'normal'!

    Been in chair full time 5 years now and the Ataxia now also affects Fine motor co-ordination (intention tremor) , jerky arm movements and involuntary movements of arms and legs and severe difficulties with speech. Along with balancing difficulties affecting both standing and sitting to some degree. (kind of like acquiring a mild Athetoid CP at a later age instead of been born with it!).

    I did wonder about dystonia but was told Ataxia can cause jerky movements instead of a constant tremor, and after seeing people on You Tube with dystonia I don't have that severe distortions of muscles getting locked in one position.

    Its more like.. say when go to put hand on computer joystick instead of just been able to get it first time my arm seems to extend fully (even though its nearer to me than that) and go out to the left a bit before I can get it to come back in and grab the top of the joystick (T-bar handle on Joystick plus) all time arm is constantly twitching left to right in little movements (the intention tremor).

    I can control it better if forearms are fully supported so can still type on a keyboard with a keyguard so can rest arms on top and just poke little finger or thumb through the holes. For some tasks I use weighted wristbands and they have helped for stuff like pointing at screen on Wii playing tennis etc on it for physio. I'm better with handhelds though as can have cushions under my arms - if screen not too tiny. (I can manage iPad quite well)

    It does get frustrating though as even the simplest things takes twice as long to do, especially in situations where not possible to have forearms supported all time (like trying to get dressed).

    Kati

  6. #16
    Kati, thank you very much for sharing this information, and for the link to your blog page where you describe it so well. I had completely missed that page, rapt as I was in reading your reviews!

    How awful that you had to learn of your diagnosis from reading a report written years earlier. And then to face additional years of increasing symptoms, and doctors who were hard to convince that you already knew what was wrong...and having to do all your own research and rehab. It makes me shake my head and grit my teeth. I salute you for never giving up, and for urging others on likewise.

    This should certainly be a lesson for people in the diagnostic process...tests for thyroid function ought to be included in all assessments, and redone periodically throughout life. Thank you again for discussing this and sharing what happened to you, and for your spirit which keeps searching for better ways to cope and live fully!

  7. #17
    Moderator jody's Avatar
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    well Im no doctor, but I do have issues with my cervical vertebrae at c-4,compression from injury, as well degeneration. I have what you call Hoffman's signs. if you face your palms up, the ring fingers twitch and curl involuntarily toward the palm. that is what prompted cervical films, and an evoked potential test for me to comfirm an injury that did not show up on the first ex rays.

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