All About Unknown Ataxia Without Family History

NAF is producing a series of monthly educational webinars that focus on one type of Ataxia at a time. We will feature a different type each month. Clinical experts will join us to take a look at the causes and symptoms of the disease, the typical diagnostic journey for those affected, and what to expect for clinical care. Research experts will teach us how the disease is studied and give an overview of the current state of research and drug development.
Many people with Ataxia do not yet have a diagnosis for their disease. That's why we decided to kick off the series in January with a focus on "Unknown Ataxia without a Family History." You may find these webinars helpful if you or a loved one has an unknown type of Ataxia.

[@lorraineophoff4984]

Thank you for all this important information!

[@alanscott4441]

Dr. Wilmott-
Thanks kindly for your time and superb insight. So grateful for your help. Idiopathic at this point, extensive genetic testing 3 years ago. Slow progressing late- onset.

[@natasharoesch4470]

I was diagnosed after an MRI I was told. “You have Cerebellar Ataxia, there is nothing you can take, nothing you can do, and it will probably get worse.

[@argentinarodriguez4170]

How are you doing? That's what I was told in January 2023.

[@natasharoesch4470]

@@argentinarodriguez4170 Hi: turns out I do not have cerebellar ataxia! Have a second opinion-it could be a movement disorder of some kind. This diagnosis was made by a neurologist looking at an MRI but did not see me in person.

[@argentinarodriguez4170]

@@natasharoesch4470 , I am glad for you. Later, in June, I was diagnosed with ALS.

[@valariedemello745]

The neurologist said the same, he gave me no direction or hope. Very scary and depressing. Better after finding NAF.

[@ggbrait7140]

Thank you!!!

[@patdenman3887]

How do I find a knowledgeable doctor in North Idaho?😊

[@joshivrujesh4695]

Sir is there any hope of future complete treatment spinocerebellar ataxia3 available

[@Middleagedmutantninjaturtle]

My daughter was diagnosed with Spinocerebellar Ataxia type 19 caused by a de novo mutation in the KCND3 gene. She has IDD as well. So it's not unknown, but it is without a family history. She's almost 6 and was diagnosed just before her 2nd birthday. From my understanding, it's supposed to be slowly progressive, but in her case, it's not. We live in Alaska so resources and help are very limited.

[@melissasmith2166]

How does this with athletics as we'll

[@truehuman9449]

Atlast nothing is shared to treat the sufferers