Saw the Neurologist today. Received the test results. I have come back positive for sca-2 (39 CAG repeats). Both small and large fiber neuropathies are associated with ataxia. I was tested also for gluten sensitivity and these came back negative. I now know the cause for my neuropathy and balance issues though now I am scared of the disease and it's progression. I have gone from climbing 14000 ft. mountains to not being able to walk through the store to do my shopping due to the pain in my feet and legs. I can't rollover and give up...guess we just take it a day at a time and keep at it. I have found that swimming, acupuncture, and yoga have helped in aleviating some of the pain...just not enough.

Dewey

the false negative for gluten sensitivity/celiac is fairly high....you might try supplementing with CoQ10 for ataxia......good luck

I agree with Pabb...testing for gluten isn't conclusive, as a rule. They really have not created a test for gluten intolerance as of yet. They can test for celiac disease, but not gluten intolerance. Go gluten free for a few months and see if you feel better. Totally gluten free, not just gluten light. Ataxia often times can be caused by gluten intolerance..I have ataxia because of gluten. If I get glutened, even mildly, my balance issues return with a vengenence.

At this point I truly wish it could be as simple as gluten free. There is no denying the genetic tests. My SCA is due to hereditary issues. MRI has shown atrophy to the Cerebellum. My older Brother has had his balance go straight down hill, my Mother, and my Grandmother. Problem is the progression of the disease has been quicker with my Brother and I. I am only 40 years old and have been tested, proded, and tested again for several years now.

I have supplemented with CoQ10 600mg a Day for several months now. I have not noticed any difference.

Beleive me, there is nothing simple about gluten intolerance. When you are intolerant and still eating gluten, many do not absorb vitamins and minerals, in turn causing neuropathy. Gluten intolerance tends to run in families too, which also means, the rest of your family could have this same issue. Not everyonew with gluten intolerance will have stomach issues, some have only neuropathy symptoms. There is no RX for gluten intolerance, just staying away from gluten, which is much more difficult than most believe.

If I was still eating gluten, I'm positive my neuropathy would be much worse.

Have you had B12 levels checked, or Vit D? My issues are caused by the gluten causing me to be B12 deficient.

What genes do you have?

I have had tests completed and then additional tests to validate the first tests. Unfortunately, my Neuropathy is tied with SCA-2. I will try to go gluten free to see if it lessens my pain levels. Anything is worth a try. The ataxia is definitely from sca-2. The genetic tests have left us with no doubt about the diagnosis. Not only do I have balance issues, my speach has begun to be affected, along with muscle cramps and spasms, and slow eye movement, and some memory problems (though we have not began thios testing). The more information I gather regarding sca-2 makes me very nervous about this disease. With the rarity (1 to 2 in 100,000) of the disease I can understand looking for other causes.

Dewey

I am sorry to hear you have this genetic confirmation.

BUT...there is hope...

http://www.scientificblogging.com/ne...ing_hypothesis

Also, the amount of CoQ-10 you are using may not be enough.
The doses typically used for ataxias are higher.

http://internaf.org/ataxia/nac-q10.html

http://www.pspinformation.com/nutrit...0-Ataxia.shtml

You might look into switching to the ubiquinol form of CoQ-10 as it appears more effective in lower doses. Not all CoQ-10 supplements are well absorbed, so make sure you have a good one.

^Nice work finding those articles. Interesting reads. Trying dantrolene, if TC's doctor approves, may be worth trying. Post here with updates if you ever go this route.

I'm not sold on Coenzyme Q10. It helps...anecdotally. And there's no evidence-based sufficiently powered studies to give it credance. It is expensive to take at those high doses, without any evidence for its benefit. I'm still in the hung jury.

Thank you for the links. I will talk with my neurologist to get a recommendation for the levels of CoQ10. Everything I read makes no recommendation for dosage levels. Thank you.

Dewey