EA1: Does anyone else in this forum suffer with EA... - Ataxia UK

Ataxia UK

4,020 members4,557 posts

EA1

anihol profile image
9 Replies

Does anyone else in this forum suffer with EA1 it would be nice to talk if possible.

Written by
anihol profile image
anihol
To view profiles and participate in discussions please or .
9 Replies
MayaS profile image
MayaS

Hi! My son has EA1. What kind of symptoms do you have? My son has epilepsy, bad motor skills and he is quite clumbsy too. He can't stand long hot baths, for example. He has been very well last 2.5 years, but now we have started bad episode again. My son got first symtoms when he was only 1 years old. Now he is 15, and we got the right diagnose on last summer. So it took 14 years to find out what the name of the game really is! It would be great to hear more about you. This disease is so rare, all information is very welcome. And I'm sorry about my bad English, we live in Finland.

Helen555 profile image
Helen555 in reply to MayaS

Yes my daughter has had sezuire type episodes for 17 years and it's just been diagnosed her little girl is 7 she has it and taking same episodes my son has it and his two sons have it now there's so many questions I want to ask doctor but we've only been once my other son is waiting on results he has sore feet legs tired feeling unwell doesn't take sezuires xx

Helen555 profile image
Helen555

Yes my daughter has it my son and my grandchildren just diagnosed last year x

anihol profile image
anihol

Any meds tried and working for fatigue?

MayaS profile image
MayaS

Helen: Our doctor told that people who have EA1 could have too short achilles tendons in their feet, that may cause sore feet too.. Achilles tendons can be fixed with surgery.

Anihol: Our son eats two kind of meds, Neurotol Slow and Diamox. He has quite difficult epilepsy to treat, meds help some time, but then they lose their power.

They are now testing medical cannabis for ataxia here in Finland,have you heard has cannabis helped anybody?

anihol profile image
anihol in reply to MayaS

No not heard. No suggestion of that here yet unfortunately 😉

Helen555 profile image
Helen555 in reply to MayaS

Thanks my son is in agony with his feet and is wAiting on results of gene test for ataxia type one as the rest of my kids and grandchildren have it he has terrible pain feet and legs x

popepjp profile image
popepjp

Hi I have episodic ataxia 1. I have weak legs and feet feel funny, having bad chest wall pain, and on oxygen, plus other problems. I would really like to find something to help me better.

MayaS profile image
MayaS in reply to popepjp

Hi popepjp!

Do you have any medication to your symptoms?