Episodic type 1 ataxia

[anihol]

Has anyone else got episodic type 1 Ataxia?

[Helen555]

Yes my granddaughter and daughter and son and two grandsons and husband just diagnosed last week

[anihol in reply to Helen555]

How are they coping? What are their symptoms

[Helen555 in reply to anihol]

My daughter has had it since 13 been passed from pillar to post now my granddaughter taking same turns. My oldest son and his kids as well seen a professor last week he was great and diagnosed episodic antaxia type one but you go away and want to ask loads of questions now I wondered if anyone else had this type

[anihol in reply to Helen555]

I personally don't know of anyone else in this forum. I was diagnosed on 1st Dec but no one else I know has it if it is hereditary then it looks like I am the first at 41 years old.

[Hidden]

Hi anihol Sorry I've been away, on holidays. I've been diagnosed Progressive Episodic Ataxia. The MRI came back as Progressive Ataxia and the blood test I never actually saw the results. The neurologist who conducted the tests said the test came back as type of Ataxia, Episodic, inherited. Then the neurologist up and retired, I asked my GP, for another opinion (more tests, but he beleived it to be a waste of money, as the tests conducted were very thorough, and he is well aware I'm not rich!!) Iam 46 years old, live in Australia, most of the attention here is on FA. I lost the ability to write and sign my own name at 40, the ability to write and sign my name, came back at 43, but absolutely does not look like my handwriting or my signature (thank god for technology and near enough is good enough on the signature!!!) My memory is a joke! Sometimes I am sharp as a tack other days well "what day is it?" Don't know what else to say!!!

[MayaS]

Hi! My son just diagnosed Episodic ataxia type 1. He has epilepsy and bad motor skills, he is quote clumsy too. Symptoms are worse when he is ill or very tired, and when bad episode with this disease is on.

What drugs or treatments do you have with EA1? Our son use medication like Neurotol slow and Diamox.

He was just 1 year old when he got first symptoms. And now he is 15 years old, it took 14 years to get right diagnose! We live in Finland, and we don`t know anyone who would have this disease. It is so hard to have any information about EA1.. My English is pretty bad, but I hope that someone could answer to my message

[anihol]

I have episodic type 1 ataxia and I am 42 years old. Only on meds to regulate sleep as the others didn't work for me. Just trying to manage the fatigue and other symptoms. The worst is my eyesight I've had to stop driving

[MayaS]

What kind of symptoms do you have,besides fatigue? When did you have this diagnose? Our doctor told us, that EA1 will become easier when our son grow up.. =o

[anihol]

Hi i have hearing problems and eyesight poor. Feel drunk, tingling in my head face arms hands legs and feet and I also suffer with migraines but the worst for me is the fatigue. Mine appears to be progressive worsening over the past 3 years. Hope this helps. Anita

[anihol in reply to anihol]

It's supposed to be episodic but movement is my trigger hence the constant symptoms but some people get less episodes as time goes on.