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Hi I'm Tina 49yrs old. I have the inherited form of SCA6 from my mothers side. She is Now 80yrs old and cannot walk anymore.

I started losing my balance at 37 yrs. I now stumble a lot. Have to hold on to something if I lift my feet up. Going downstairs I need to hold on both sides. I've been reading others posts and sent away for trehalose and niagen. I'm also taking COQ10. Thank you for info on these. My neurologist doesn't say anything about vitamins helping either.

Recently I've been waking up in the morning like my arms are still asleep. Tingling. I had this just in my index finger for about a year but now it's in my hands and forarms. Goes away after a few minutes. Does anyone else get these feelings of peripheral neuropathy ?

Thanks for listening Tina

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  • Sorry no experience like that.

    I too am going the wrong way though, but I try to exercise as much as I can.

    I think it is good to use the stairs as long as you can. I use 2 rails too. I am too scared to go down forwards so go backwards and at the top go on the floor to stand-up. Not very elegant but works!! I use a 4 wheeled walker but try not to hold on too much.

    HOPEFULLY the trealose and Niagen will work for you. They reckon Ubiquinol is better absorbed than CoQ10?????

    Hope some of this helps : )

  • Thanks How old are you? Sometimes I go downstairs backwards too. I do whatever works. I still have two in high school and want to drive until they graduate. Positive thoughts right.

  • Lol .. I am hopeless with my age but I have just had a birthday and I am a bit older than you and 55 and over in the UK so we do not have high school. I stopped driving about 5 years ago but I taught our 2 to drive first (we live out in the sticks so they needed to be mobile quickly).

  • My sympathies. I had xactly the same and overnight I developed Carpel Tunnel syndrome. I've had to have two operations which have helped a bit but still getting occasional tingling. Now I suffer with terrible pains in my left hand for no reason. I sometimes think we just get these things and no one has any answers.

    Maybe one day someone will.

    Take care xx

  • Yes, I have CA, and get the tingling in my hands and feet. Sometimes it keeps me up at night. It started out with just fingers, and has become this way, just over the last several years. My balance has steadily gotten worse, too. My doctor wants me to use a cane and a walker, if I'm having a bad day, with my balance. I have not been told, by my Doctor, of any benefits from vitamins. Good luck to you. I hope you can get some relief for your debilitating symptoms.

  • Hi Tina I am surprised that your neurologist hasn't suggested vitamins, my neurologist put me on different ones to help with the MS/Ataxia and it's been incredible plus I take Echinacea tea daily for immune system and wow it wrks wonders I hope you can find what works for you

  • Hello,

    What kind of vitamins do you take specifically for your condition?

  • I take D3 1000 my B12 1000mg Biotin 5000mcg also I drink Enchinacea Plus tea daily.I have been going to planet fitness twice a week and have gained much strength I my legs and arms All that I do and take easy approved even suggested by my neurologist

  • Dear Tina, A HUGE welcome to this site! My neurologist suggested taking 600 mg (300 mg am and 300 mg pm) which I do. I don't notice any difference in my ataxia symptoms, but I'll do as he says, as it may be helping me without my noticing. Haven't tried Trehalose or Niagen. I have taken vitamins, etc. for several years now, although I don't think they've made any difference in my ataxia symptoms (my hair and nails grow well though...,ha!). Yes, I do have peripheral neuropathy in my fingers/hands. My best to you..., ;o)

  • Thank you. What do you take 600 mg of?

  • Oh, so sorry, as that would have helped if I would have told you...,ha! CoQ10, 600 mg (300 mg am & 300 mg pm). ;o)

  • Hi

    I have peripheral neuropathy & cerebellar ataxia. Recessive. Unknown gene as yet. Still undergoing tests. I'm 46. Started with extreme headaches in 2003/04. That's when it kicked off!

    My hands, arms & left leg/ side go numb & tingle. It often feels like they're dead. I do lots of exercise. Especially strengthening. I don't know if it's helping but any exercise is gud for ataxia & possibly the nervous system in general. Hopefully assisting the circulation also. I found swimming great for my circulation.

    Ataxia & neuropathy can cause stabbing pains & a feeling as though something is running under the skin. I think it's the nerves.

    Someone once told me that itching is prolific. Nerves again I guess?

    I haven't tried trehalose yet but have been taking Co-Q10 since 2009. This is supposed to be very good & research has been done. I have taken ubiquinol but personally I felt it was too strong & made me feel worse. I've also been eating turmeric. Good for lots of issues. I've also learnt a lot about Vitamin B Complex too. Try Google.

    My GP was only concerned about prescription meds & poo-pood supplements or food. I'm a firm believer in natural vitamins as opposed to prescription drugs. although I do know that some prescribed drugs are essential.

    As for walking backwards. It's far easier but make sure you are holding on well. I have found that sitting & bumping down is helpful too but it isn't dignified! In ur own home who cares!

    Speak with ur neurologist. he should be able to advise.

    I know ataxia isn't MS but look at Dr Terry wahls on you tube. Amazing!

    😤🤗

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