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Ataxia UK
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Sporadic Cerebellar Ataxia

I'm 37 with sporadic cerebellar ataxia and honestly most I try hard to adapt. I am in the USA and a mom of 5 yet only 2 are living with me now because of this mess. It has only been 2 years and I have seen how you can go from healthy, active, and outgoing to this. I barely do much and it kills me. Family started off with the help but didn't think It was incurable and doctors don't know. I truly don't like me and miss my kids and working. Just needed to vent!

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It must be difficult for you. It's good to vent. I'm in USA also and find it very difficult to find knowledgeable dr's or specialists for ataxia.

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Thank you. I don't feel so misunderstood and alone for once.

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Dar NPJOSEPH81, Vent all you'd like, as it's very therapuetic! I'm so sorry you're dealing with ataxia, as it's very frustrating, as well as challenging! I'm older then you, 64, and have had ataxia since I was about 43, although I was diagnosed at 49. Up until 2017, my diagnosis was Sporadic Cerebellar Ataxia (same as yours), although after having genetic exome testing (as well as a skin biopsy followed by a specialized blood test), I found out I have ataxia due to adult on-set Niemann Pick C1 disease (NPC). I live in the USA (State of Michigan) also. I exercise for strength and balance and try to eat a healthy as possible. My best to you..., ;o)

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Thank you for not judging me. I what to ask for more thorough and genetic testing but hear you don't present with anything which is very frustrating. I honestly don't like docs

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Hi

It took 20 years for me to get a genetic diagnosis. I have a gene completely missing, so it was difficult, but not impossible.

I am 57. I stopped working a year ago. My type is very slow to progress

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Thank you for the encouragement.

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Everyone needs a regular way of coping - mine is a quick cry! Enjoy x

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i am loving this website for my ability to vent, read up, and know i'm not alone. Welcome! oh and when it comes to the most evil doctors (evil meaning arrogant, condescending, and generally dumb) neurologists top the list! *sigh

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Vent away! This disease sucks so bad 😐...I’ve been fairly recently diagnosed with acquired CA after 8 years of testing and being told it was β€œall in my head”, πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚, how funny is that!!! I’m so much worse than I was one year ago...my disease crept very slowly and now is picking up speed and haulin butt! Since no person alive knows jack crap about this stupid disease I literally am a passive participant in my own health 🀬 as are all of you. I’m sorry any of us has to even be on this site but I’m glad it’s here 😎

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It was all in my alsoπŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚

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Well, technically, they were right...πŸ˜‚

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Right...πŸ˜‚πŸ˜‚Thanks for the laugh!

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