I have SCA2 and my symptoms started to interfere with things probably 7-8 years ago (age 54-55, I’ve known for 11 years because my birth mother has it)), before that there were a few incidents that may have been related but not life changing. When I read the description details for different types, they all say pretty much the same general thing, although after reading people’s stories on several support sites, there’s obviously LOTS of variation—symptoms, age of onset, speed of deterioration—and I’m aware that things could be a lot worse. Does this variation have anything to do with the type of sca, or is it just the normal unpredictability??
It is known that some types are definitely more aggressive than others, and generally speaking the actual rate of progression across the majority of types can be very difficult to predict.
There is a lot of information when you start to do research, and it’s fair to say some medical jargon can be easily misinterpreted, but you may not have seen the following link.
Thanks Beryl. It was a good article. I’ve saved it to my Ataxia folder. I wish more of the sites mentioned the frequency of neuropathy with sca. I am very fortunate to not have that () but after reading on the support sites, I realize that is very problematic for many!!