cerebellar ataxia: I have been diagnosed with... - Ataxia UK

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cerebellar ataxia

patsyday profile image
8 Replies

I have been diagnosed with cerebellar ataxia and still in the progress of finding out what is causing it. had all kinds of bloods taken and mri tests. In between I've had thyroid checked and all comes back ok and no antibodies. However I've started to itch from head to toe. Also eyebrows are missing at the end and I've read thyroid antibodies can attack the cerebellum but I've had the tests and all ok with thyroid. I do have thyroid cysts/nodules. Does anyone else have this problem.

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patsyday profile image
patsyday
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thenwg profile image
thenwg

I'm diagnosed with Spinocerebellar ataxia type 14 it is genetic and I was born missing a gene from what I understood. Meaning there is no underlying problems which can be fixed.

I hope you are able to find the underlying cause and prevent further damage.

I wish you all of luck.

patsyday profile image
patsyday in reply tothenwg

thank you

I've had genetics done and it's not genetic. Still searching

HarryB profile image
HarryBAdministrator in reply topatsyday

Hi patsyday

Genetic testing is significantly better than when I was diagnosed with ataxia back in 1991. In the nineties there were only a handful of genes known to cause ataxia. Now there are in the region of 100. Even with this dramatic rise there are still around 40% of people diagnosed with ataxia who don't know their underlying cause. I am one of them. Of course not all of those 40% will turn out to have a genetic cause for their ataxia, but new genes continue to be discovered that cause ataxia. What I am trying to say is just because none of the genetic tests you have had to date have shown anything positive, that does not mean your ataxia isn't genetic. The gene just might not have been identified yet.

Best wishes

Harriet

in reply tothenwg

What is underlying?

patsyday profile image
patsyday in reply to

underlying means the cause of the ataxia

jill55 profile image
jill55

Have you been tested for coeliacs?You don't need to have stomach problems to have trouble with gluten.

patsyday profile image
patsyday in reply tojill55

have been tested for coeliacs and gluten, it's not this so now have to wait for more tests. This time for autoimmune

Yes I do I have cerebellar ataxia as well its hereditary it came from my greats family, I itch and scratch scars and don't remember how.

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