Sporadic Cerebellar Ataxia : I'm 37 with sporadic... - Ataxia UK

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Sporadic Cerebellar Ataxia

NPJOSEPH81
NPJOSEPH81
14 Replies

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!

14 Replies
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Cubsfan

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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NPJOSEPH81
NPJOSEPH81
in reply to Cubsfan

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

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february

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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NPJOSEPH81
NPJOSEPH81
in reply to february

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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violasrbest

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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NPJOSEPH81

Thank you for the encouragement.

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Castlelight

Hi

I just read this post. What type if ataxia were you finally diagnosed with?

Glad to hear it progressed slowly! ALL the best to you.

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Litty

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

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sam99a

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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Mariweena

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 “all in my head”, 😂😂😂😂, 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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NPJOSEPH81

It was all in my also😂😂😂😂😂

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ddmagee1
ddmagee1
in reply to Mariweena

Right on! Exactly how I feel! For years, my doc would make me feel like many of my symptoms, were minor, and “all in my head” - so to speak. So, finally, when I had a bad fall, with a concussion and blunt force trauma, and he couldn’t come up with any answers, that I had a physical problem, my daughter, who is an RN, had had enough, and moved me from our small town, to the big city, where there were specialists. My Internal Medicine Doc, and a neurologist/movement disorders specialist, both came up with me having Cerebellar Ataxia, and Parkinson’s Disease! It’s been very difficult for me, as the PD, is progressing. No Doctor now, makes me feel like a ‘turkey’!

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Mariweena

Well, technically, they were right...😂

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NPJOSEPH81

Right...😂😂Thanks for the laugh!

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