Ataxia Forums

[Ostap]

I want to be positive but am frequently left a little sad after reading fellow sufferers experiences. I believe I have Cerebellar Ataxia, although I have not been gene tested. I find webinars hosted by experts helpful. The US NAF is particularly good for this type of information.

[coupons]

I feel the same as you. Not tested for Cerebellar Ataxia, waiting for apt with gene doctor. Reading about systems for this is discouraging. So far the only thing is my walking problem. I am so glad I found this forum for help.

[7151 in reply to coupons]

Hi yes thats what the docters think i have celebrellar Ataxia but they are not shure ! Non of them have spoken about gen testing ! How do they do that ? No one in my family have had this problem, i ve got used to thé walking and manage with à stick ..its thé trembleing when i stand still i find thé most difficult ,i saw à ostéopathe thé other day she made me feel positive and showed me what to do to get more oxygène to thé brain 🙂

[auntiesally in reply to 7151]

a blood test, do you go to see an ataxia nuerologist? excuse the poor spelling!

[coupons in reply to 7151]

I went to a neurologist and he sent my blood to a lab to be tested. They tested for 7 different diseases all came back negative. I have an apt with a genealogist in April to do further testing. We have 500 genes and it is hard to find out which one is causing me trouble. My brother has CANVAS, I do not. Doctors think I have something hereditary. All I know for sure is I have ataxia. How did the osteopath Dr. say to get more oxygen to your brain. After my April apt. my next step is a pt person that specializes in ataxia.

[Ostap in reply to coupons]

I thought we had 3 billion + genes, of which 20,000 were protein coding. Far fewer are thought to cause Ataxia, with others being discovered each year. This data will be more important as treatments evolve that can turn off or fix affected genes. That’s my understanding. Obviously having a diagnosis may help to understand the implications of passing on the condition.

[7151 in reply to Ostap]

Thankyou for your reply

[rideabike in reply to 7151]

I would like to know how to get more oxygen to my brain. I have ataxia due to cervical myelopathy or spinal cord compression. My oxygen is lacking for sure. How do you do that? I am 71 yrs. old and spinal column isn't doing so well. Thanks for your posts and yes it can be a little daunting for ataxia sufferers to find positive feedback.

[7151 in reply to rideabike]

Hi well i saw a ostéopathe who said it was very important to Renew thé oxygène in you celles including the brain ..basicaly its freesh air and breathing exercices ..deep breaths in and out whilst reclaxing ! I m not very good at explaning x

[rideabike in reply to 7151]

Thanks...it was clear.

[7151]

Thankyou yes i am followed by à neurologue ! For her its antaxia célèbrella ..nothing realy showed up on thé scanner apart from maybe SMALL stroke ! Thé neurologue dosent yet know what the cause is ..in thé mean time i walk with à stick and i can handle that , now my bigest problem is shaking when standing still ..like waiting to pay at thé supermarché that freaks me out and eveyone around me ! I have ordered à stick with à little stall that i could sit on from thé pharmacie ..hopfuly that will help ..thé neurologue has never mentioned gen ..no one in my family has Ataxia ... please exuse any spelling mistakes also 🙂

[Ostap in reply to 7151]

I have very bad tremors. They can be treated with Propranolol or Topiramate. Propranolol hasn’t worked for me. I’m waiting for a Topiramate prescription.

[ninotchka in reply to Ostap]

I don’t trust drugs because of the side effects but I would be interested to learn more about those that you mentioned!

[Ostap in reply to ninotchka]

These drugs are common, with generally modest side effects. The more severe your tremors become the less suspicious of the drugs you will become. Thank you for the reply.

[7151]

Thankyou i will mention that to my neurologue

[Ostap in reply to 7151]

These are established treatments. Propranolol is a Beta Blocker and Topiramate is a seizure drug used more commonly for epilepsy. There are many other similar drugs. Neurologists are very slow to give treatments I find. Tremors are a terrible thing. Good luck!

[7151 in reply to Ostap]

Thanlyou

[coat2003]

no wonder you are sad, when still young 46 and battling with hereditary sca2 and muy bro 50 as well. Will be glad he gets there with lone crutch.I use my walker, strong mental health is 80% of slowed progression,vits, exercise, cooked home food and rest....keep mental health strong and do what you need doing ....