Hello
I have cerebellar ataxia. That is all I know. But on this forum, people say they have SCA1, SCA 2, SCA3 etc. How can I find out which I have?
I have cross-eyes and double vision, ataxian voice (a slur, a high pitch, and short of breath), bad balance, wide gait, drunken walk, mental blockages and lots of others but not sure if they are due to ataxia. Some are getting worse and some aren't
Thanks
Peter
Have you been diagnosed by a Neurologist, specifically one specialising in Ataxia?
Your particular Ataxia may have been brought on by your illness/trauma, it doesn’t always have genetic origins.
Ask your GP to refer you to your nearest Ataxia Centre, probably Sheffield. Appointments are only given on GP referral.
A neurologist can help you find out what kind you have. There is the hereditary kind and there is the idiopathic (caused by an outside source).
The symptoms don't really matter. Even within the same type the symptoms can vary by what symptoms you have and the severity.
Some people have found a benefit to go to someone who specializes in ataxia but I found more benefit going to physical, occupational and speech therapy. They teach you how to move/walk/talk better. I still haven't figured out what a doctor that specializes in ataxia does that a neurologist or even my family doctor can do. My family doctor does everything and when he can't do something he refers me to the right person.
Genetic blood test can tell you exactly what you have
I agree
What are the approximate cost to finding out which ataxia you have. Can the average payer afford the costs.
Definitely not genetic. It was caused by a brain tumour in the cerebellum. If I understand correctly, they had to remove the cerebellum or at least some of it. I think there's a hole in there as big as a ping pong ball.
The gentleman who operated in 1974 - Sir Miles Gibson - is now retired. I don't know if he specialised in ataxia or not.
I was hoping for a simple way of finding out on the internet or a self-test or something. I'm not sure it's worth going to Sheffield thank you but I'll bear in mind as I may need to prove I have it some time.
I have a local neurologist who I will be seeing soon so I can ask him and see what he says.
Beryl Park said:
Have you been diagnosed by a Neurologist, specifically one specialising in Ataxia?
Your particular Ataxia may have been brought on by your illness/trauma, it doesn't always have genetic origins.
Ask your GP to refer you to your nearest Ataxia Centre, probably Sheffield. Appointments are only given on GP referral.
That should be easy enough and my local doctor could do it. But would it work when my ataxia is not genetic?
sunny8088 said:
Genetic blood test can tell you exactly what you have
i am told i have cerebellar ataxia.symptoms can vary. i think it all depends how bad the damage is. now the sca 1 , sc2 etc. . ask your dr. mine couldnt tell me. my symptoms are getting worse
My symptoms are genetic - several DNA tests later they figured it out. I'm not sure if a genetic test would work for a non-genetic version - but your GP should know (or know who they or you could ask).
I would suggest consult a 'Neurologist' and give her little background
We at the forum can not give definitive answer , we are just sharing what we have gone through.
Neurologists would be able to address your concerns
Any testing for Ataxia is done by a Neurologist or a member of his staff. This is not done by a GP.
cross eyes said:
That should be easy enough and my local doctor could do it. But would it work when my ataxia is not genetic?
sunny8088 said:Genetic blood test can tell you exactly what you have
I found a youtube video about ataxia after a brain tumor. Ataxia and brain tumor
Any surgeon that removes brain tumors could answer the question of sypmtoms after brain tumor removel
The test for hereditary ataxias won't work for idiopathic causes. I think it's just ruling out everything else. Not sure how they diagnose these.
cross eyes said:
Definitely not genetic. It was caused by a brain tumour in the cerebellum. If I understand correctly, they had to remove the cerebellum or at least some of it. I think there's a hole in there as big as a ping pong ball.
The gentleman who operated in 1974 - Sir Miles Gibson - is now retired. I don't know if he specialised in ataxia or not.
I was hoping for a simple way of finding out on the internet or a self-test or something. I'm not sure it's worth going to Sheffield thank you but I'll bear in mind as I may need to prove I have it some time.
I have a local neurologist who I will be seeing soon so I can ask him and see what he says.
Beryl Park said:Have you been diagnosed by a Neurologist, specifically one specialising in Ataxia?
Your particular Ataxia may have been brought on by your illness/trauma, it doesn't always have genetic origins.
Ask your GP to refer you to your nearest Ataxia Centre, probably Sheffield. Appointments are only given on GP referral.
I think you just have to call it "cerebellar ataxia", like I do. There are no numbers for us...