Cerebellar ataxia

General
1

how many of you on this site have cerebellar ataxia? im trying to find info on it and its the least researched ataxia . theres some info but not not a whole lot to help us.

thanks

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2

I do. It's Hereditary - Unknown.

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thanks for your reply

4

I have cebellar atazia. It started 20 years ago and got worse all the time. At first I could walk and then on a walker some. Now am on a walker all the time and next is a wheelchair. The worst is not being able to go places other people do and feeling left out, and a burden. No one understands and say I'm not a burden but I don't feel that way.

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5

Check out this site..

http://myweb.tiscali.co.uk/ataxia.pages/

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thanks ozzie. ill check it out

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I read the article Ozzy put on , and is exactly the things I have went through. I really enjoyed it.

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I do. It's Hereditary , its SCA-3

total 7 people in family ( 4 are alive)

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No one in my family has ataxia; so we thought maybe it skipped a generation. If it does that. Cause people back then didn't know about the diseases we have. They probably just thought it was a malformation.

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with the technology we have now there finding out a lot of things. but the meds for ataxia arent good at least for my ataxia. too many side affects.

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what ataxia do you have refinisher?

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cerebellar ataxia

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The Dr. said I have cerebellar ataxia but I never had additional tests. He just went by the cells that were dead or dying in my cerebellum. I read the article Ozzy had and the symptoms and thinks that happen were exactly what mine were. Do you know does cerebellum ataxia affect any other part of the brain?

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There are no meds for any type of Ataxia at the moment

refinisher said:

with the technology we have now there finding out a lot of things. but the meds for ataxia arent good at least for my ataxia. too many side affects.

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thanks sunny i saw on drugs.com there was but had a lot of side affects

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from my understanding depending what part and how bad it has damaged the cerebellum. right now i have a gait problem,dixxiness when bending over ,standing up or sitting down too fast,turning too fast headaches now and then.stooping is out of the question. i consider my self lucky so far consider from what i hear from other people.i was diagnosed last year.i will get a brain MRI once a year to keep track of the damage and hope it doesnt get too worse.

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http://ir.horizon-pharma.com/releasedetail.cfm?releaseid=916672

This is the only hope in near future
refinisher said:

thanks sunny i saw on drugs.com there was but had a lot of side affects

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18

I was going to get another MRI but due to the cost I never did., That was about 20 years ago, so I imagine things have got worse., Must have cause my gate, balance and things that go with Ataxia has gotten worse,.At that time I did not even need a walker, but now I can't move without the walker.

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I have CSA type 2 - hereditary. I can remember back to high school always being a klutz. I'm now 50 and still walking independently. My dad had it (didn't know that's what it was till he retired and they dug further). I recognized his symptoms and sure enough I have it. My brother and my son don't show any signs so the neurologist said not to get tested.

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IF they show signs go for Gene test

https://www.ataxia.org/pdf/Gene_Testing_for_Hereditary_Ataxia.pdf

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