Ataxia is my new dx. I have no idea what it is!

Can anyone help me? Is there another forum for this condition with resources to teach me how to cope?

I will be having a follow up with Neuro sometime after September but I would really like to know what I'm facing now.

Kelly

I'm not an expert but it's loss of coordination and/or balance with involuntary movement, as you mention in your signature, problems with vertigo and balance. Are you currently seeing a physical or occupational therapist for this?

You may want to visit the forum on movment disorders. Here is a link with more information.

http://www.ataxia.org/index.aspx

Best to you as you recover.

I have a bunch of referrals in the works and nothing has started yet.

I was only dx yesterday.

Thanks for the link

I responded on another thread as well. My grandfather has a specific type of ataxia (a rare type) and has gradually been losing motor control over many years. He is now at the point where he cannot walk, feed himself or even swallow solid food, transfer from bed to chair, hold onto items in order to write, etc. His mind is just fine, but his body won't cooperate with most things he wants to do.

Again, his is a very specific, rare, and GENETIC type of ataxia, and it has taken many many years for him to get to this point. I don't think this is how all ataxias go. Were you given any other specifics on it, such as "cerebellar ataxia" or anything?

In general, I think it just has to do with loss of coordination, which could mean that you would need to learn new ways to accomplish daily tasks that become difficult, use specialized tools to help you, or possibly have someone assist you with them.

Mist,
I was recently diagnosed with ataxia too, after my internist referred me to a neurologist. Had an MRI (unremarkable) Blood tests for vitamin levels, copper, etc all came back fine, except for vit D. Neuro asked about my drinking (heavy for last 10 years) and suggested I have our well water tested for heavy metals. Since I haven't done that yet, he's sending me for a urine test to check for heavy metals.

My ataxia manifests in balance/gait issues, difficulty with stairs and sometimes tremors in my legs. From what I've read it's usually a symptom of injury to the cerebellum due to some toxin like alcohol, mercury, vitamin defiency, etc. I've cut out drinking and started a vit D supplement. Today Mrs. D, on this board suggested that gluten can also cause ataxia. My neuro is sending me for urine tests to check for heavy metals. I also have a referral to an ENT, as inner ear issues can also cause ataxia. Good luck with your search and keep us posted.