I have not been diagnosed with SCA5 but my father was about 12 years ago. I am preparing to have the DNA testing done because I’ve had a few things happen in the last year that have made me think it’s time to get diagnosed. I will bullet some points to see if anyone on here has or is experiencing them as well:
Bumping into things - not like me to do this
Brain feels sluggish, I have a very hard time focussing
Extreme Fatigue
Muscle cramps
Was diagnosed with Celiac disease this year - though I have been G-Free for years
When I walk sometimes my knee will just buckle
Night sweats
I feel really unstable when I try to look around too fast, especially when I’m riding my bike
Sometimes when I’m reading my eyes will jump on the page, when this starts it’s hard to gain control again
General overall body pain, sometimes very intense
I have two ruptured discs in my neck, C5 and C6 - I still have no idea how this happened
Anal fissures - I’ve had these for a year, in two days I will be having surgery
I’ve been swallowing wrong a lot lately, down the wrong tube kind of swallowing
Headaches - A lot of them
Burning pain at the base of my skull, like I just can’t get comfortable and it’s very tight
General overall sad feeling I can’t shake
I am 43 years old
I own a fitness and nutrition studio and am usually very active and pumped about my work, typically I run every day and lift 4-5x per week. In the last year I’m lucky to workout once a week and take a few walks
Most of the time I feel like I can’t breathe
Sorry this is so long, I’m hoping someone will have helpful info. I have a sinking pit of the stomach feeling that I have SCA5 just like my dad.
Hi Amanda, welcome😊
Although I’m not diagnosed with SCA5, I can relate to many of the symptoms you describe.
Many symptoms are common to all SCAs but can vary enormously in severity and progression, even the same type, and within the same family.
If you need info about ataxia see www.ataxia.org and also www.ataxiacenter.umn.edu
My own ataxia is said to be genetic. I was told I had a Recessive link but my daughter (aged 37) is experiencing worryingly identical symptoms, so…
She refuses to accept a link to SCA, she has an appointment with an ENT specialist who may refer her to Neurology.
Hi Amanda,Sometimes ataxia can be hard to diagnosis.I’ve had symptoms since 1989.But recently diagnosed this year.I have Sca 7.Symptoms are similar with some ataxias.But don’t be discouraged with your exercising it does help even doing a little.You can’t let it define you.Because no matter what you face daily you can face it.If you think always of what you can do not what you can’t do.A physical therapist told me this.And it was some very good advice.Praying for you wishing you hope to never give up.Earlene
Hey Everyone. Just an update. I was diagnosed with SCA6 last June. My symptoms have gotten worse since I posted this in 2016 but still able to do most things. My neurologist said no more riding bikes. I have some balance, speech, vision, swallowing, and migraines which I’ve been told are very common with SCA6. When I run I wear ear buds with music playing and my vision doesn’t bounce around and my limbs feel stable for the most part (without the music running is a no go). My dad is now 82 and he’s still walking and talking. He wasn’t diagnosed until he was in his 60’s - I was diagnosed at 45 and our symptoms are a little different but we have the same repeats (22). Anyway, I just realized I hadn’t checked in in a while. Thanks for all the replies and support. This disease is a real a-hole.
Hi Amanda, welcome back.
Are you saying that your father was diagnosed with SCA5, and you have been diagnosed with SCA6
Anyway, despite the challenges of symptoms (and believe me we all know what you’re talking about, most symptoms are common) it’s good to know you are still able to enjoy running, even though bike riding is out.
It’s interesting that wearing earbuds seems to be something of a ‘distraction’ and help with Nystagmus
xB
Hi Amanda, welcome back.