Cerebellar ataxia

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

2 Likes

I do. It's Hereditary - Unknown.

thanks for your reply

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.

3 Likes

Check out this site..

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

1 Like

thanks ozzie. ill check it out

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

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

total 7 people in family ( 4 are alive)

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.

1 Like

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.

what ataxia do you have refinisher?

cerebellar ataxia

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?

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.

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

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.


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

1 Like

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.

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.

IF they show signs go for Gene test

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

1 Like