Newly Diagnosed

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  • Опубліковано 12 вер 2024

КОМЕНТАРІ • 10

  • @lorraineophoff4984
    @lorraineophoff4984 Рік тому +1

    Thank you very much. My neurologist is still testing me to find out what’s causing my ataxia. Frustrating, so far 2 yrs of testing.

  • @lorraineophoff4984
    @lorraineophoff4984 2 роки тому +1

    Next text after MRI’s of Brain, neck, mid back, lower back… rule out MS, spinal tap shows borderline Alzheimer’s disease, Neurologist says I don’t have Alzheimer’s at this time,??? Neurologist wonders why Movement Specialists don’t see what he sees every time I see him. Very frustrating. Some days I have lots of imbalance, other days not so much!

  • @Will-kr5kw
    @Will-kr5kw 2 роки тому +1

    Thanks for the presentation. Just had a negative gene test after years of others tests, and, learning my late father & another male relative had undefined Spino cerebellar ataxia with years of balance problems. That said, Dad was an engineer and I always thought his balance was due to his industrial deafness, whist, I also had meningitis as a child; have significant damage to my Vermis (on MRI) with progressive balance issues (particularly when tired);and, am about to undergo my second set of genetic testing.
    I’d say my main issue is definitely sleep, and, the consequences of not getting enough & resulting in fatigue, clumsiness , headache and nausea. Whilst, I just got approved for FMLA which I’ve already used a lot secondary to the aforementioned. Ultimately, I’m not sure what the future holds, however, I think your advice was golden & I hope I can use it moving forward, having already joined the NAF and seeking out support groups.

  • @lorraineophoff4984
    @lorraineophoff4984 2 роки тому

    Now Neurologist wants me to have genetic testing done.

  • @rogersarber4575
    @rogersarber4575 Рік тому

    As a newly diagnosed patient about a month ago....this information was very helpful!

  • @lorraineophoff4984
    @lorraineophoff4984 Рік тому +1

    Why are comments and questions not answered?

  • @lorraineophoff4984
    @lorraineophoff4984 2 роки тому

    Why would my Neurologist diagnose me with Ataxia, send me to two movement specialists who do not think I have Ataxia, then be referred to Physical Therapy where when tested show imbalance. Do I have Ataxia or not???

  • @sandramurkerson9041
    @sandramurkerson9041 7 місяців тому

    Avm in cerebellum bled.....caused my ataxia....birth defect

  • @OdtsetsegGraceDorjderem
    @OdtsetsegGraceDorjderem 2 роки тому

    I AM FROM MONGOLIA. CAN THIS DOCTOR BE INTERESTED PATIENTS IN MONGOLIA? IN MONGOLIA WE HAVE NO CLINICS SPECIALISED IN THESE CASES AND ETC. I AM GETTING MOST INFORMATION FROM INTERNETS. THANK YOU.