Experiences with

Ataxia

This is a really big deal for me as having an MRI too, which again if told 'you have cerebellar ataxia' is it worth it? Which I have already been told. Thank you.

Impact stories like theirs can help researchers & drug developers understand the realities of living with Ataxia. You can read it here: https://c-path.org/impact_story/cpta-impact-through-optimization-of-clinical-trial-design/

After nearly 3 years of gluten free and dairy free diet, I would like to hear from others. Their personal stories and any support groups. There is so much information and knowledge to share with each other. Thank you.

I'm guessing I'm not the only one here, it just seems since Covid,any doctor you ever get to see (even my neurologist who is an Ataxia expert and very thorough) only want to sit down and ask questions,while filling in some form. 

The gene responsible for a newly classified type of Ataxia, SCA27b, was recently discovered. A family that is affected by this type of Ataxia will share their personal experience searching for a diagnosis and their research participation next week at our Annual Ataxia Conference.

Hello friends does anyone know about the antibodies TG6 for gluten Ataxia I have been told I have these but I was diagnosed with idiopathic cerebella ataxia 2 years ago I have received results from Sheffield ataxia centre but I have a tumor in the cerebellum into brain stem not sure what this means any

Top Natural Homeopathic Remedies for Ataxia Alumina: Homeopathic medicine for Ataxia with staggering gait and heaviness or numbness in legs Alumina is the top natural Homeopathic medicine for Ataxia. The main symptom that calls for its use is a staggering gait with heaviness or numbness of limbs.

I have ataxia. The symptoms are almost like osteoarthritis. Those of you who can not seem to have any relief from their pain, have you been tested for ataxia? An MRI discovered what was causing my pain. Coupons

I belong to Ataxia U.K. I do not need Quit Support,fortunately I have never smoked. Living with Ataxia is enough to cope with so I’m glad I do not have to cope with the problems of smoking.

Kind regards, Progressive Supranuclear Palsy with Predominant Cerebellar Ataxia https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6987520/

I have ataxia sc6.. Does anyone know if transatlantic flights make Ataxia and it's symptoms permanently worse?

I have suffered the effects of Ataxia for over 30 years now and thankfully the progression has been relatively slow, but now I will reach the age of 75 this year, I get up in the morning and play the game "Old Age or Ataxia". I never know which one to blame for the way I'm feeling!

NAF is www.ataxia.org..the National Ataxia Foundation Although recruitment is restricted to the US..this will give interesting information.

I would like to say a massive thank you to group of runners running in the London marathon for Ataxia uk my son in law Ben Smyth is in that group Ben has raised so much awareness and money in the last year and is a huge supporter of Ataxia uk.

Before I knew I had ataxia my Dr. said a knee replacement was necessary. How do I know what is causing my pain and balance problems?

Has anybody tried the diet recommended by Ataxia uk that may help with certain symptoms in some people. If you have has it helped any? My good lady wife has got me on it and I’m starving all day long, only been on it two weeks and already look like a skeleton 💀 Thanks for any advice 😊

Posting this as my response to an earlier post on Ataxia forum may have warranted new post. https://healthunlocked.com/ataxia-uk/posts/149124609/pathological-enhancements?utm_campaign=ataxia-uk&utm_medium=email&utm_source=notification&utm_term=new-daily+digest

I'm guessing that it's something to do with hormones maybe Ataxia is starting to develop?

https://www.biopharmadive.com/news/biohaven-troriluzole-fda-application-spinocerebellar-ataxia/651629/ Biohaven sends latest drug to FDA, despite past trial setback

How do I join a ataxia program?