Cerebellar Ataxia

jccgf · 02-15-2007, 09:37 AM

Thanks, Rose, for the specific mention of B12 deficiency. How could I have neglected to mention that

? Vitamin E and CoQ10 deficiencies are also associated with cerebellar ataxia, and googling cerebellar ataxia with any of these should bring up lots of supporting data. Now, one would hope that the good doctors at Mayo would have considered these things, but you never know, and lab tests are not 100% accurate in determining underlying deficiencies. We know from personal experience how often B12 deficiency goes unrecognized for so many reasons. I'd want to be sure I had strong levels of all of these.

Cara

Cathy · 02-15-2007, 11:25 AM

You gals are so great, unbelievable really. I heard back from my sister this morning and she as well was so thankful for your kindness. However, she and her doctor, who was part of Dr. Andrew Weil's Integrative Medicine group at the University of AZ, (pretty impressive I thought), decided that more testing was not the right way to go as she struggled with this 3-4 years before diagnosis. She has pages of testing from Mayo so she might have been tested, she's not sure. I'd like to share her words as she really touched me with them, and, I suppose each of our journeys will take us one day to the point where she is: "My body can't take any more uphill climbs above and beyond the ones I already face each day. If I allow my body what it needs each day, my body reciprocates with the best it can each day. We are content with each other -- my body and I -- and my quality of life in Maria Joseph manor is good -- the best possible outcome I believe." So I think we now just hope and pray for a lot of good days and the strength to live the best we all can.
Thank you once again.
Gratefully,
Cathy

tritter · 08-28-2009, 10:34 AM

Quote:

Originally Posted by jccgf

Thanks, Rose, for the specific mention of B12 deficiency. How could I have neglected to mention that

? Vitamin E and CoQ10 deficiencies are also associated with cerebellar ataxia, and googling cerebellar ataxia with any of these should bring up lots of supporting data. Now, one would hope that the good doctors at Mayo would have considered these things, but you never know, and lab tests are not 100% accurate in determining underlying deficiencies. We know from personal experience how often B12 deficiency goes unrecognized for so many reasons. I'd want to be sure I had strong levels of all of these.

Cara

Hello. I am new to this site. Last year my father starting having problems with vision in his left eye. The eye doctor said it looked like a stroke behind the eye. Just as he was beginning to cope with that his speech became slurred and he would stumble around like he was drunk. He said his leg at times feels like it was not even a part of his body, but rater something heavy to carry around. He said that he is not actually dizzy, but feels unsteady. Also, his speech at times is very hard to understand. This past weekend he had a couple of episodes where he could not talk. Finally, drinking liquids (mainly water) chokes him. We too him to UAMS a diagnostic hospital/clinic. They ran all kinds of tests. They could not find anything. At first they were sure it was Lou Gherics, but then they decided it was a shrinking cerebellum. That too they could not say conclusively without a brain biopsy which my father has opted not to do. I began reading some of the posts here and he is wanting to try the enzyme to see if it helps with his unsteadiness. Plus we are looking for information about the gluten free diet. My questions are, what mg do you take of the CoQ10? I know the results take a while, but how long did it take before you started noticing a difference? Any help, advice, etc would be appreciated.

mrsD · 08-29-2009, 08:12 AM

Quote:

Originally Posted by tritter

Hello. I am new to this site. Last year my father starting having problems with vision in his left eye. The eye doctor said it looked like a stroke behind the eye. Just as he was beginning to cope with that his speech became slurred and he would stumble around like he was drunk. He said his leg at times feels like it was not even a part of his body, but rater something heavy to carry around. He said that he is not actually dizzy, but feels unsteady. Also, his speech at times is very hard to understand. This past weekend he had a couple of episodes where he could not talk. Finally, drinking liquids (mainly water) chokes him. We too him to UAMS a diagnostic hospital/clinic. They ran all kinds of tests. They could not find anything. At first they were sure it was Lou Gherics, but then they decided it was a shrinking cerebellum. That too they could not say conclusively without a brain biopsy which my father has opted not to do. I began reading some of the posts here and he is wanting to try the enzyme to see if it helps with his unsteadiness. Plus we are looking for information about the gluten free diet. My questions are, what mg do you take of the CoQ10? I know the results take a while, but how long did it take before you started noticing a difference? Any help, advice, etc would be appreciated.

The patients with ataxia, take very high doses of CoQ-10. This nutrient has absorption problems, so some companies have special forms that they claim are more potent.

In this study, suggested doses were really high 600mg 4 times a day.
http://clinicaltrials.gov/ct2/show/NCT00957216

This study showed both low dose and high dose worked:

Quote:

Eur J Neurol. 2008 Dec;15(12):1371-9.Click here to read Links
Coenzyme Q10 and vitamin E deficiency in Friedreich's ataxia: predictor of efficacy of vitamin E and coenzyme Q10 therapy.
Cooper JM, Korlipara LV, Hart PE, Bradley JL, Schapira AH.

University Department of Clinical Neurosciences, Institute of Neurology, University College London, London, UK. j.cooper@medsch.ucl.ac.uk

BACKGROUND AND PURPOSE: A pilot study of high dose coenzyme Q(10) (CoQ(10))/vitamin E therapy in Friedreich's ataxia (FRDA) patients resulted in significant clinical improvements in most patients. This study investigated the potential for this treatment to modify clinical progression in FRDA in a randomized double blind trial. METHODS: Fifty FRDA patients were randomly divided into high or low dose CoQ(10)/ vitamin E groups. The change in International Co-operative Ataxia Ratings Scale (ICARS) was assessed over 2 years as the primary end-point. A post hoc analysis was made using cross-sectional data. RESULTS: At baseline serum CoQ(10) and vitamin E levels were significantly decreased in the FRDA patients (P < 0.001). During the trial CoQ(10) and vitamin E levels significantly increased in both groups (P < 0.01). The primary and secondary end-points were not significantly different between the therapy groups. When compared to cross-sectional data 49% of all patients demonstrated improved ICARS scores. This responder group had significantly lower baseline serum CoQ(10) levels. CONCLUSIONS: A high proportion of FRDA patients have a decreased serum CoQ(10) level which was the best predictor of a positive clinical response to CoQ(10)/vitamin E therapy. Low and high dose CoQ(10)/vitamin E therapies were equally effective in improving ICARS scores.

PMID: 19049556 [PubMed - indexed for MEDLINE]

from http://www.ncbi.nlm.nih.gov/pubmed/19049556

The Tishcon company is often used by doctors and this place sells it. Its higher quality means you don't need gram range dosing but it is more pricey than others.
I'd start at the 60mg twice a day and increase if needed over time.
http://www.epic4health.com/noname.html

There are other makers, one is Doctor's Best... but it has Bioperine added to increase absorption. Bioperine may interfere with drug therapies if your father takes prescription drugs. So I would not use this type at this time.

Non Tischon CoQ-10 will need high doses, at least 300mg once or twice a day to start, and see if you need to move higher, say every 2wks-4wks. Increase slowly and give it time to work. This may save you money. CoQ-10 is not a toxic substance, so only your pocket book is a factor for most people.

This monograph may be helpful:
http://lpi.oregonstate.edu/infocenter/othernuts/coq10/

Quote:

Friedreich's ataxia

Friedreich's ataxia (FRDA) is an inherited, autosomal recessive neurodegenerative disease caused by mutations in the gene that encodes frataxin, a mitochondrial protein of unknown function. Decreased expression of frataxin is associated with accumulation of iron within the mitochondria, thereby resulting in increased oxidative stress, imbalances in iron-sulfur containing proteins including mitochondrial aconitase, and reduced activities of the mitochondrial respiratory chain (66). Clinically, FRDA is a progressive disease characterized by limb ataxia and CNS abnormalities that result from sensory nerve degeneration (67, 68). In addition, FRDA patients may present with symptoms of hypertrophic cardiomyopathy and diabetes (69). A pilot study administering coenzyme Q10 (200 mg/d) and vitamin E (2100 IU/d) to ten FDRA patients found that energy metabolism of cardiac and skeletal muscle was improved after only three months of therapy (70). Follow-up assessments at 47 months indicated that cardiac and skeletal muscle improvements were maintained, and that FRDA patients showed significant increases in fractional shortening, a measure of cardiac function. Moreover, the therapy was effective at preventing the progressive decline of neurological function (71). Although the results of this pilot study are promising, large-scale randomized clinical trials are necessary to determine whether coenzyme Q10, in conjunction with vitamin E, has therapeutic benefit in FRDA.

There are newer versions of CoQ-10 called Ubinquinol. These allow lower dosing, but are much more costly. They claim better absorption.

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