Ataxia with a type

General
1

I just heard about my final round of tests at the geneticist. They are all negative or normal. I am pretty disappointed because I wanted an ataxia type to learn about.

And I am not good at waiting. They did say that definately I have ataxia I just need to wait for a year and see if there is more tests. I have had several problems with my eyes,and my sight is rapidly getting worse, I am worried about the next year. I am having problems see this and am making alot of mistakes, I hope I am fixing them. I have Dragon Naturally Speaking, I just have not loaded it. I guess its denial.

All of my symptoms support hereditary, as well as the placement of the atrophy in my cerebellum. That I don't understand, so maybe someone here can explain a bit.

I did get SSI disability, but I also got a job pretty recently that I love, and is in a supportive environment, I it just that I am exhausted, mentally and physically at the end of the day. I used to think I was tired when I was younger, I had no idea what tired is!

I have an interview in a few days, to talk about trying to work for a few years, and them reinstating my SSI if needed.

One more thing I am wondering, possibly some one here knows, is Ataxia always degenerative? I have not had enough MRIs to see if there is degeneration yet.

Or do I have to just wait more and see?

Thanks, Bella

2

Hi Bella

I can sympathise with where you are at. If they haven't found a genetic 'type' for your ataxia then its probably hard to know whether its degenerative of not. Some are, some aren't. If you haven't already, one thing you could try so you feel like you are 'doing something' is investigate gluten ataxia. This may not be what your problem is but you've now got everything to gain by looking into it.

Chin up and best of luck.

Helen

3

Bella, how frustrating for you.

I have to agree with Helen, check out going gluten free. It’s been nothing short of a miracle for me. Who knows…it could be just the thing for you.

4

I actually have been gluten free for a couple years, because of migraines and joint pain. Who knows, maybe it is helping, and I just haven't really noticed. But you are right, I will look into it more. There is always more to learn.

It's funny. Today I had to stand quite a bit, and I felt like it was ok, or that I had permission to be wavering back and forth, and hurting. I found myself not feeling apologetic, and not trying to hide it.