hello i am new to this group. i was daignosed in 2022 and have lack of information .

[femilia]

i am 46 and it is 8 years i feel some walking problems

[wobblybee]

Hi🙂 I can well recall being newly diagnosed..it was stressful and confusing…mainly because I’d never even heard of Ataxia.

In my case, my initial problems were confined to poor balance and dizziness…but it’s obvious that Ataxia affects people differently. I now have mobility issues but it took several years after diagnosis for this to become obvious.

Most people experience ‘general symptoms’…but the variation in severity and progression can vary enormously.

If possible, depending on where you live, it is advisable to have genetic testing. Some types of Ataxia can be treated..depending on the exact cause (deficiencies and autoimmune)..and if the cause is linked to Gluten Ataxia..a strict Gluten Free Diet can often be very helpful.

The rate of progression, and severity of symptoms is almost impossible to predict……although genetic types follow a pattern..but not everybody in the same family will follow the exact same course.

🙂 We are all advised to stay mobile, and exercise within capability to maintain a strong core muscle strength. At the same time safety is paramount, if stability is compromised it’s essential to use a walking aid..at least a walking stick.

🙂 If you need general information..these links will be helpful.

ataxia.org.uk/about-ataxia-...

ataxia.org/what-is-ataxia/#...

[Tallguy101]

Hi I can remember clearly when I was diagnosed back in 2006 or 07. Can't remember exactly. I know it was a shock to me. I was recently divorced and felt alone. Having said all that it wasn't until 2013 that I started to have mobility issues. I spent a day at the Olympics in 2012, which involved lots of walking. It's very important as woblybee said to exercise, I have a regime every day of balance, strength and cardio because we're more sedanteary. Probably 1.5 hours per day.

I had to give up full time work in 2020, with hindsight it was too much for me.

I've only just got an exact diagnosis of sca 48, before that it was unknown cause...

All I can say is to try (carefully) to do what you can and try to accept it, as the sooner you do the better it is.

Wishing you good luck in your journey.

[penelope2]

Hi, because unfortunately a diagnosis of ataxia takes so long, maybe years, then a further diagnosis of what type even longer, then my advice is to read and research as much as you can. Consider a 100% gluten free diet as this is now being considered as the most common type of ataxia. Research Professor Hadjivassiliou on PubMed, he is the leading specialist in the UK at the Sheffield Hospital.It is time critical as gluten ataxia will get worse unless going gluten free and if this is the type of ataxia you have then time is paramount. It is your choice to try a gluten free diet. Health professionals might not agree with this and say go for tests first. You have to be eating gluten for 6 weeks prior to a positive test but as only the Sheffield ataxia clinic does this and you can wait years for a referral then damage to the cerebellum maybe irreparable.

Of course you may not have ataxia or it may not be caused by gluten so it is up to you to arm yourself with as much information as you can and go with your decision!

The Helpline at Ataxia UK will help you but they cannot make a diagnosis.

I do hope you have not got ataxia.

Good luck.