Newly Diagnosed with spinocerebellar ataxia

[Buddyfreckles2022_]

Hi. This is my first post.

Can you please take the time to tell me your stories, just a brief outline.

Thanks a million

🤔

[Telegraphist]

There are many different SCA's. I have SCA6. Do you know yours?

[ddmagee1]

Wishing you the best of luck, and hope you find a caring Doctor, who is willing to help you!

[Tallguy101]

Hi there, I was diagnosed in 2007 after having very minor symptoms for the previous 2 years. Despite countless MRI scans, blood tests and visits to see my neurologist Paolo Giunti they can't pinpoint exactly what type I have. I'm now 53 and don't work now, was made redundant in 2020, Despite everything I remain very positive with the help of my partner.

I wish you well in your journey, like I say try to remain positive and stay strong.

[Jimbob7492]

Hi my name is James and I also live on Isle of Man. If I can offer any help please let me know. Take Care Regards

[Buddyfreckles2022_ in reply to Jimbob7492]

Hi there

Www.facebook.com/sunnyblondediva

It would be great to chat on FB

Take care, Laura

[penelope2]

As i see it diagnosis of what type of ataxia you have is not the be all and end all. Unless you have an autoimmune type then at the moment there is no medication that can reverse the prognosis.

The problem of not having empathetic and knowledgable health professionals is very real and has a real impact on mental health. So keep searching for the right doctor.

Look after yourself, good nutrition, rest, exercise and a supportive family will make a difference.

Become an expert, research and Ataxia UK website is a good start and will make you feel proactive.

For me the most important thing I've done for myself is motivation and belief in myself to keep looking for answers. Listen to your own body, what helps and what doesn't and do what is best for you and put yourself first!

Keep strong.

PS my own journey to date would take much too long!