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Ataxia Support

I'm Tiffany from Canada

Hi all

I am 37 married from Canada
I was disgnosed at the age of nine with something called handy dandy walker which I’m sure is crap.
At 16 I was finally diagnosed with Cerebellar Ataxia, they did all kinds of testing (I’m sure you can all relate with the testing) they told me it was not hereditary and that I would not pass it down to my kids but they still didn’t know where or howI could have gotten this.

As of right now I was told by some people with Ataxia (NAF) that Cerebellar Ataxia is just symtoms and notan actual diagnoses. I also have not seen a nuerologist since i was 16.
Anyone have any recommendations?

Hi Tiffany, welcome :slightly_smiling_face: Cerebellar Ataxia is most certainly a recognised condition, and don’t let anybody tell you otherwise. You probably should be seeing a Neurologist at least yearly for a review, to monitor if your symptoms have changed, and make you aware of any medications or therapies that are available for new symptoms. If you no longer have contact with a Neurologist…

Hi Tiffany. I’m also from Canada, the Edmonton area. I was diagnosed with sca2 in 2008 and started showing symptoms a few years later. I am now 62. Some of my symptoms are pretty noticeable but so far my eyes don’t seem to have suffered and I can usually make my self speak clearly if I notice slurring. I don’t see a neurologist specifically but my family doctor keeps a pretty close eye on me. She referred me initially to a movement disorder clinic for a baseline assessment (have never had an MRI as no one figured it would show anything new.) I see a lung clinic for other issues and recently had a swallowing test (very interesting!) to make sure that wasn’t contributing to getting pneumonia. I hadn’t realized there were so many drugs that could be tried but I’m hesitant about them as I’m already taking so many already.

Depending on where you are in Canada, hopefully you can get referred to a movement disorder clinic or such. Being near a university is a bonus! Don’t loose hope…I personally think having a good gp who’ll learn along with you is a great place to start. Good luck.

PS I googled it and there is a Dandy-Walker malformation!!

:slightly_smiling_face: Just in case this is useful Tiffany.
Ataxia With Subacute Onset. DandyWalker syndrome is a congenital CNS malformation characterized by complete absence of the cerebellar vermis resulting in cystic expansion of the fourth ventricle. Affected children suffer from developmental delay and ataxia .

Thank you very much
This is very useful, much appreciated

Thank you very much, I will have to look into contacting a Neurologist on my own as my FD (family doctor is not willing to look into it)

:slightly_smiling_face: Just this morning Tiffany, on a different Ataxia Support Group, I welcomed someone also diagnosed with Dandy Walker. He lives in Ohio.

Oh wow that is great