How do you find out what kind of ataxia you have and how to minimize it's affects?
Find a Neurologist you trust and ask. They will take some history and have some test done.
First and foremost...see a REAL ataxia neurologist...at a university attaxia research center. IT IS IMPERATIVE. Anything else will waste time, effort, and money, and snowball your frustration. IT IS IMPERATIVE!!!! The neuro down the street will not do. The neuro across town will not do.You may have to travel 100, 500, even a thousand miles. If your child had a rare disorder, you wouldn't think twice. See a REAL ataxia neurologist. IT IS IMPERATIVE!!!!! Are we seeing a pattern here? Once you have ataxia, you are in a whole different world. If you have a Porche, or Bugatti, you're not taking it to your local Midas or Pep Boys when you have a problem.
Go get it done..EVERYONE else is just guessing. Once you have the correct diagnosis, if it is important to you (which many times it isn't because it doesn't make much difference), get the support you need from other ataxians.
Hello Michelle,
I noticed in your profile that you need a new doctor. As Jonas said, unless a neurologist specializes in ataxia, he/ she will not know much about it. You need to find an Ataxia Center or Movement disorders Clinic.
Contact the National Ataxia Foundation at www.NAF.org
Here is a list of centers near you. https://www.ataxia.org/pdf/Neurologists_United_States.pdf
Be aware that it might take months to get an appointment, but it is worth it.
Sorry Michelke, disregard the first link. The National Ataxia Foundation website is ww.ataxia.org
Genetic testing (blood) is the only sure way to diagnose the type of ataxia. Many neurologists will not agree to the genetic testing. Find one who will.
And to correct myself for the second time, the exact address is www.ataxia.org
What is the matter with me today? Monday morning brain, may be? 
Take care and good luck to you!
Hi Michelle Welcome. I wasted many years on regular Dr's and Neurologists trying to find out about what I had. Finding a specialist is key so you won't have excess tests that you don't need or waste as much time. But that said they may be able to give you more of a classification not always a diagnosis of which exact type you do have just a general like I have. I was classified as having Sporadic Spinal Cerebellum Ataxia. Meaning they haven't found a gene yet in my blood tests etc, that they have found as of yet that states it's hereditary. That is the classification for Sporadic no that it comes and goes, but it can too if you have Gluten Ataxia and a few other's. I was classified back in 2006 having ataxia.
To me it's doesn't really matter which type I have it's about what I can do not what I can't. Regardless which type you have there has been a huge amount studied about movements/exercises regular help allot. Not only the brain but our pain/stiffness. Good luck with you journey with this ataxia and finding out which type that you have. If you do find out that's wonderful and helpful but if you don't feel bad about it. This is a new chapter in your life so it's just a learning curve that's all. :0)
It's not always that though, it's the cost. It is cost prohibitive to get tested in Australia for EA2.
I'd love to be wrong if someone has any further information on this.
wise1 said:
Genetic testing (blood) is the only sure way to diagnose the type of ataxia. Many neurologists will not agree to the genetic testing. Find one who will.
Lucy said:
It's not always that though, it's the cost. It is cost prohibitive to get tested in Australia for EA2.
I'd love to be wrong if someone has any further information on this.
wise1 said:Genetic testing (blood) is the only sure way to diagnose the type of ataxia. Many neurologists will not agree to the genetic testing. Find one who will.
Lucy....a real 'ataxia' neurologist is necessary. Genetic testing can confirm if you have SCA 1,2,3,....and so on, but in my opinion that is not too important. Have you been told you have EA2? Is there a family history? Do you have symptoms? If yes, what is the point in testing? If no, what is the point in testing? Testing just causes a cautious, inhibited lifestyle. You are constantly searching for what may or may not be there. Testing also make it impossible for you to get any private life or disability insurance. I think it better to leave well enough alone,m unless you are planning a family
Is there a reason to be going to specialists and getting all the testing and finding out what type?
Is there anything they can do differently to treat different types? I understand if you are younger and making choices regarding reproduction - but I’m older (50) , so already have all my children, and all but one of my biological children already have their children — so I’m not sure if it’s worth it if it’s just to know. If it makes a difference in what can be done and some sorts are treatable/curable absolutely! Are there types that are curable? Or differences in treatment?
Thanks for any input.
Welcome, Michelle! I agree with what other's have said..., ;o)