Hi there, has anyone got or knows someone that has ataxia caused by deficiencies of:Vitamin E
Vitamin B12
Or CoQ10
I have often seen these mentioned on the Internet but have never actually known anyone whose cerebeller ataxia is caused by any of them.
Or maybe another supplement essential to the body?
Thank you.
I don't know anyone who has ataxia from being deficient in any of these supplements or any other for that matter.
I saw Professor Hadjavasiliu (don't know if I've spelt his name correctly) in Sheffield and it is well known about ataxia worsened by Gluten. I also had a liquid form of Vit E.
They tested me for a wide range of causes including ataxia telangastasia but all proved negative. I've been told it's an autosomal recessive gene but...
Research is ongoing & new previously unknown genes/ataxias are being discovered.
I take all those supplements you have mentioned, as a precaution. Don't really know if they're helping cause I don't know what I'd be like if I didn't take them. The only additional supplement I take is Vit D, but I don't take too much of anything cause it can be dangerous. Any supplements could interact with other meds too, so it's worth checking with a doctor first.
No .. now that I think of it. X
Thank you for replying. Someone just might come forward, who knows, it will be interesting if they do.Best wishes.
look into getting tested for MTHFR. All r the he genetic testing I has for ataxia came back negative. On a hunch my primary doctor suggested testing for the MTHFR gene mutation. He had figured out a way to have insurance cover this very expensive test here in the states. Turns out I have a severe genetic mutation inherited from each of my parents.
If I understand my doctor correctly, in the simplest of terms, MTHFR is the inability to process folic acid. I think folic acid is a key component in regenerating brain tissue. I may be way off base but this forum has some very knowledgeable people. I imagine since birth my cerebellum has never been able to regenerate new cells. My doctor says that if this isn’t the cause, it is at the least a big contributor.
I also had a macronutrient test done and I was deficient in all the vitamins you listed.
Hope this helps.
Keep moving, keep smiling!
Have looked up MTHFR and you poor thing. Sounds like you are in the US and how impressive that your doctor had a hunch. Does this cause CA too? The 3 vitamins that I asked about are all associated with ataxia. The latest findings here is that a type of autoimmune ataxia caused by eating gluten has nearly as many numbers as the hereditary ataxias. It is not easy to get any numbers involved.
Best wishes.
The B-complex supplements i have to take daily. The hand tremors come back if I miss two days. I was also told to take D3+K2 so it’s easily processed since I’m over 50. The Vit E I take is tocotrienol and instead of CoQ10 I take a different version PQQ.
I was positive for gluten sensitivity but not gluten ataxia. I’m on a gluten free diet with the occasional 24hr fast. Not sure if any of these methods work but I can say I was diagnosed 7 years ago but I walk unassisted, but I walk slowly. I still surf and go fishing so maybe this is a good regimen. I also exercise everyday sometimes twice. Qi gong and tai chi help tremendously
And daily prayer never hurts either.
All the best. It’s a tough road so I look for all the detours.
yes my ataxia is caused by malabsorption problems with my b vitamins. I have traced my lineage back to 5 generations that had this problem . Every generation got worst because of the demand of our bodies, environment foods. Non of my doctors offer any significant help. So I took many blood test and paid for them outright. First you need an understanding of what is going on in these test. You need to get tested for iron level, serum b12, rbc folate,potassium, magnesium, . Just to name a few. My iron and transfer in levels were a 4. It should be 150, my b12 levels were 200 it should be 1100. My folate was 5 it should be 30. Right now I had already suffered some issues neurological with my walking. Extreme tiredness,heart racing every time I stand.(pots) tingling in feet with a burning sensation. Right now I have stabilized my ataxia I take intravenous b12, high doses 2 x a day. Methlyfolate. Potassium high levels, magnesium, vitamin d3 plus k, heme iron and a very good vitamin b supplement.. I also take extra stomach acids( hcl) This has help with no stiffness, never had restless legs, I have regular heartbeat. Not tired . Always energized my weight has stabilized. In the beginning I had lost 30 pounds. I have managed to chain that muscle back. My nerves are actually starting to repair themselves. I feel like a reversing out symptom .
my 3 kids are starting to become very tired so I started them on heme iron sublingual b12 and a very good probiotic. This works for them and I can see a difference. They are full of energy. No dragging. Mid naps or after school naps.
I am not a doctor and this is not advice.
From my research I have found that ataxia is. A symptom and not a disease. There is always a root cause . I have found my root cause .
🤔You mention in ‘your profile’….that you have been diagnosed with SCA3.
Has your Neurologist prescribed IV Vit B because you test as being deficient?
I have searched for my own root cause and have stabilized my ataxia on my own with no help from a doctor who preferred to prescribe Hrt to me. I am sorry I am a medical researcher by profession. As I said they are no help. Especially because they don’t understand and won’t try to understand because it is not the norm.
Yes, I have Ataxia caused by Vitamin E Deficiency.
I had extreme vitamin B deficiencies, especially B1 (thiamine) which contributed to cerebellum ataxia
Thank you all for replying.To be honest I didn't expect this response with so many deficiencies experienced by so many.
I have done much research myself, reading papers etc. Which has led me to self diagnose gluten ataxia. I am also dairy free, rice free and buckwheat too following a CYREX test. This was through a nutritional therapist and i have stabilised the ataxia now. I live in the UK and am very interested how you have all gone through the process of finding these deficiencies and then the treatment?
I thoroughly agree that this beyond the thinking of the medical professionals in the NHS.
Any information that anyone can provide will be very much appreciated. I am willing to try anything to reverse the ataxia but as for deficiencies I don't know where to start. I take good quality high dose supplements already but maybe there is more I can do, I hope so.
Thank you all for responding.
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