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!!
I also have SCA2 (36 repeats) and am currently pre-symptomatic. I see you’re from Edmonton. I saw a neurologist at UAlberta about two years ago. She told me that the latest research suggests that onset, severity, and speed of symptoms seems to be determined by the number of repeats you have and your specific family history (i.e., age of onset for other affected family members). And are also impacted by environmental factors such as lifestyle (exercise, diet, drinking, etc.). I’m also assuming that other genetic issues or predispositions (such as anxiety or depression) may interact with SCA2 symptoms to create family specific symptoms. That’s why it is so difficult to predict symptom onset, severity, and progression. The neurologist told me that her ‘best guess’ is that I will start to develop symptoms around the same age that my mom is when she starts showing symptoms. In my Mom’s family SCA2 seems to onset around age 60 (but differs for her extended family).
Also, yes, different types of SCA have different symptoms with different onset, severity, and progression (I’m pretty sure I’ve seen charts that compare the different types of SCAs but I don’t remember from where so don’t have a link). If you’re ever interested in getting together for a coffee and a chat, let me know.
Wow…sort of like reading about myself! I was diagnosed at the UofA, had an evaluation at the mobility clinic (then at the Glenrose) but have never actually been seen by a neurologist. I received a very informative handout at the genetics clinic with information similar to what you were told on it. My doctor is great but we’re learning together. I recently fell and broke my wrist, and my physio suggested that I should really be re-evaluated so I am waiting to get into the Parkinson’s and mobility clinic at the Kaye Centre.
It would be interesting, and hopefully helpful, to get together. Are you in the Edmonton area?? I’ll check how to contact you privately and be in touch soon.