I have read over the years for ataxias it is in the gram range for CoQ-10. I have seen studies in the past at 4 grams a day. The problem is that many CoQ-10's have poor absorption.

Also a site that sells specially formulated types is
www.epic4health.com

Their product, claims superior absorption, therefore allowing for lower doses.

Best of luck Dewey, i will be thinking of you
Arlene

Thank you. I am devastated by the diagnosis. I thank god every day for my wife. She has been my rock through out this...and things will only get more difficult. We received the test results yesterday and are still in the process of comprehending and figuring out how to deal with this. I am receiving a referal to one of the top Dr.'s for Ataxia....we want to get ahead of the disease to hopefully slow the progression. If the progression continues as it has in the past 3 - 5 years I am very afraid.

Dewey

Good for you on the yoga, and finding extras that help acupuncture and all... are you on any meds for the neuropathy..??

I have nerve pain tingling numbness for many years, especially on humid days... mainly in face and some body parts.... been 10 years of that... finally few years ago started meds to alleviate some of the pain part....lucky for me just a low dose of gabapentin helps enough! But do not always like being on meds...
also on baclofen as I get muscle spasms... I do not have a dx of any kind... balance issues, neuropathy, vertigo, muscle spasms, weakness on right side, right eye blurs at times.. but the eye shows no damage yeah... but body is getting worse each day... undx though.. clear MRIs so no answers...

so glad you did get a dx! even if not great dx, good to know what is going on.. hugssss, sarah

I currently am on 30mg Cymbalta in the am and pm. I have tried gabapentin, lyrica, nortryptiline, lydocaine patches, and a couple others I cam't remember. Cymbalta helps at times. Seems stress makes things worse....so things are fun right now :-( .

http://www.ncbi.nlm.nih.gov/pubmed/17951282
since there appears to be a Calcium issue here, i would have to wonder about Vit D and magnesium as well. As the celiac folk can tell you, having the genetic predisposition doesnt equal having the active disease....perhaps the genes are causing a problem with absorption/use of certain nutritional elements. I also wonder if you might have inherited the sca2 from one parent and celiac gene from the other.....good luck

Unfortunately I do have the active disease. Atrophy to the cerebellum, ataxic gate, double vision, muscle cramps and spasms, loss of fine motor skills, speech impairment, loss of balance, fatigue. I will be going to see a SCA specialist and one of the things we will start is a supplement program to help with symptoms. I've been experiencing symtoms now for about 7 years. I have watched the disease progress. At this point I'm willing to try most anything.

Dewey

Super that you're getting to see a good doc. Check in once in a while and let us know how you're doing. God bless.

Hi!

I am also sorry about your diagnosis and your active illness.
I hope you may find contributing factors you may do something about.
I will also be interested in learning how you are doing in time!
I have been following neuropathy info for over 20 years now ... and it keeps changing! I hope we hear of something very helpful to you soon!
I am glad you are able to see a specialist!
Good luck and thanks for sharing with us!
Stay tuned for neuropathy news here!

I do understand this is disconcerting for you.
Science seems to change quickly these days, so I am holding some hope for you.

Holding Great Expectations for You!
~DejaVu

Hi NM_Dewey,

I read your original post and thought I had written it. I give you credit for going the genetic testing route. From day one when suggested by my neuro at that time, I refused on principle. I do not trust medicine, insurance, or government with information that may have a detrimental effect on my children and grandchildren, i.e. "pre-existing condition." Not to mention I would have to pay almost $7,000 and it's not covered by my insurance.

I was training for a marathon in Hawaii when symptoms hit. Within 2 years I was dependent on forearm crutches to ambulate. Misdiagnosed twice with two different types of MS, strongly suspected Hereditary Spastic Paraplegia but without a genetic marker test they would not confirm it.

Now, after 10 years for severe and progressive symptoms, the diagnosis is Spinocerebellar Ataxia and Atrophy, Cerebellar Degenerative Disease with Ataxia. Oh! And let us not forget the unrelated near fatal brain stem stroke of December 2008. Docs and neuros went nuts trying to figure out if my symptoms were stroke or disease related. Almost controlled chaos in the ER, according to my wife.

I understand, appreciate, and totally empathize with your situation. Until I find the blue ink stamp on the bottom of my foot with an expiration date, who the h*ll cares what the neuros say. Stephen Hawking has Lou Gehrig's Disease and wasn't suppose to live past high school. What's that tell you?

As our unit motto says from special ops, "Evaluate, Adapt, and Overcome!" If anybody gives you a problem, tell them they are free to go get counseling.

You are NOT alone. Thank you for sharing your circumstances.