SCA 10

[SJP239]

Hi!My partner was recently diagnosed with SCA 10. We'd be interested to know if anyone else has this rare type.

We're waiting for an appointment with UCHL in July but that seems like a long way off!

Thanks!

[PatsyIpswich]

No, but interesting.. July is not long to wait relatively speaking but you could contact Ataxia UK helpline for advice. Take care x

[SJP239 in reply to PatsyIpswich]

Thanks for the message. I have been in contact with the Ataxia helpline and this forum was suggested.

Yes...I guess July isn't too far away and hopefully we'll then start on a journey of discovery about SCA 10, which will lead us to understand more.

Thanks Patsy.

[stay-strong]

Hi SJP239My wife has SCA10 .

July is pretty quick in this climate . A general appointment with Neurologist has a 2 year wait list (Scotland)

[SJP239 in reply to stay-strong]

Hi there. Thank you for the message. It's reassuring to know there are other people with SCA10 out there- you're the first person who's responded.

I wasn't complaining about having to wait until July but just that we feel completely in the dark until we get to July, because of the understandable lack of information on what is apparently a very rare ataxia. It's all a bit new and shiny for us; it's about figuring out what the future might look like and what my partner (57 and still working f/t) can/can't do....

[stay-strong]

Hi SJP239

I totally understand your frustration . My wife was diagnosed in 2007 with Ataxia then in 2016 she found out exact type but we are currently trying to have this reviewed but the waiting time is disgusting just to speak to neurologist which in our area is 2 years. My wife had a long list of developing symptoms she eager to discuss with specialist. She is now 47 .

[SJP239 in reply to stay-strong]

Gosh...I'm so sorry to hear about the long wait for appointments. We're in England, so the waiting times are far better. I asked for a referral to the main London Ataxia hospital (UCHL), having used Google before we met the local neurologist. Nothing seems very joined up but I suppose it's because of the rarity of the condition. (The consultant used Google search whilst we were at the second appointment because he said he'd never seen it before.) Onwards and upwards for us all then...good luck. Sarah

[stay-strong]

Yeh we just need to be positive as much as possible , my wife is trying alternative natural supplements and cleaner diet also starting oxygen therepy to see if it helps any , I suppose its all she can do her end is to improve her internal enviourment and external enviourment to as pure as possible to give her cells a fighting chance 🙏 this is something that we knew about in the early days , only found from our own research , the specialist don't mention it .

[SJP239 in reply to stay-strong]

It's good to hear that your wife's made positive changes with her diet. I guess that diet and exercise are always positive ways to go...if only I could convince my partner of this! Sigh.