Hello im.sophie im 32 i found my biological family in november but my father had passed in the july from ataxia also his brother and niece and his mum also passed from it i have had pains in my ankles for 2 yrs had teats for artirtis diabeties etc everything now they think it could be ataxia waiting on testing incase and on nerve blockers which help a little but not much is like a burning pain when i walk when wake in morning feels like i have twisted my ankle a nurous of times sometimes get little like numness in arms or pin prinks and my eyes water alot but that all the symptoms i have if i do have it my biological fathers wife hasnt been very helpful as im a shock aftwr he passed all i get told is they lost there speech first but my speech is still fine
Hi Sophie, sorry to hear about the pain you’ve been having and the news that your biological father passed away. Did you know what type of Ataxia your biological father’s family have? There are lots of different types and each present themselves with slightly different symptoms but I’ll be honest I haven’t personally heard of ataxia causing pains like a twisted ankle. I’m no medical professional though!
All the best.
He had sca3 ataxia only feels like it in the morning when wake up not during the day as it eases up 
Oh right well I do hope that it hasn’t been passed on! That does sound annoying though and I can appreciate that it must be frustrating to have gone through so many tests to try and get to the bottom of it! Glad it eases up though
If you haven’t already done so, I suggest also posting a discussion on the Ataxia UK Health Unlocked page https://healthunlocked.com/ataxia-uk/posts
They seem to get more responses than here for some reason.
Thanks
No worries! My mum has a type of Ataxia so I keep an eye out on both pages. If I see your post on the other site I’ll say hi
Hope you find some answers that help 
Hi Sophie Lou:)
If it does turn out to be SCA3, this is also known as Machado Joseph Disease (MJD)
As well as LWA support group, you can also log onto 3 Facebook support groups specifically for people coping with the condition.
Joseph Machado’s Disease
Machado Joseph Disease aka SCA3
Machado-Joseph Disease
Wait until you get a definite diagnosis before doing too much research:) xB
Yeah thats what my fathers family refere to it has mahado joesph disease my knowledge is that it is along the lies of ms and parkinsons
What is lwa
Sorry, I should have said Living with Ataxia. I meant us :)xB
Sophie Lou White said:
What is lwa
Thanks
I have sca3 aND it has not been fatal in my family . My great aunt who was the first to be diagnosed is now 70 ànd still doing well although wheelchair bound. I am 43 and my symptoms started at about 32. But Ive never experienced anything like you àre describing .
I also have SCA3 my grandfather was the first to be diagnosed he lived until 75, then it was my father that inherited it he passed at 62. I didn’t start having symptoms until I was about 39. First was the loss of balance then difficulty walking and tremors. It has been my experience that your speech is not affected till later on in the progression. I am now 44.
I defintly have problems with balance i trip alot and pull my ligaments in my ankle alot and they never seem to heal i sometimes get like electric shock pains in my arms anyway i get my test results tomorrow feeling nervous but at least i will have a plan
My mom is 65 and her speech is still good . What caused your grandfather and father's deaths?
Keri Ferreira said:
I also have SCA3 my grandfather was the first to be diagnosed he lived until 75, then it was my father that inherited it he passed at 62. I didn't start having symptoms until I was about 39. First was the loss of balance then difficulty walking and tremors. It has been my experience that your speech is not affected till later on in the progression. I am now 44.
Do you have kids?
Keri Ferreira said:
I also have SCA3 my grandfather was the first to be diagnosed he lived until 75, then it was my father that inherited it he passed at 62. I didn't start having symptoms until I was about 39. First was the loss of balance then difficulty walking and tremors. It has been my experience that your speech is not affected till later on in the progression. I am now 44.
Yes i have 3 children unfortantly i dont actually know what was the reason my father died apart from the ataxia was the cause as never meet my biological father i found him 4 months too late
I got my test results back i do not have ataxia sca3 which i am pleased about .
Hi Sophie 
Has further testing been suggested xB
Sophie Lou White said:
I got my test results back i do not have ataxia sca3 which i am pleased about .
Hiya no further testing has been suggested unless my doctor thinks for there to be a reason too but like they said as we dont have a confired diagnoisis from my biological fathers side because they wouldnt sent it to the doctors we cant be correct on which type of ataxia although they told us to test for sca3 or mahado joesph