Hi guys!!
I love this comfort this site gives. After a year i finally have diagnosis, don't get ne wrong i knew i had SCA2 as it's strong in my family.
Anyways, my symptoms are early yet.. Slightly staggery... Constant muscle contractions.. Soreness... Fatigue... Speech slight slurred at times. What other SCA2 sufferers do we have here and what is your age and stage? Your experiences will give me such comfort, thank you.
Lucy
Hi Lucy
I'm 58 started with SCA 2 about 10 years ago. I was diagnosed within 6 months through a DNA test. First few years my Ataxia didn't progress much but in the last 18 months is very noticeabe. I use a walking stick although sometimes its more trouble than its worth but i need it for kerbs and standing in queues. I have a taxi to take me into work and take me home so no buses which stressed me out.
My coordination is rubbish and my speech is sometimes slurred especially if tired and the end of the day. I still manage full time work but folk at work are very good and as an office job I manage ok although my typing and hand writing skills are bad. I have a big keyboard with big keys which helps. My handwriting is bad but through the past few yearsI've adapted things at work so I don't have to write much.
Recently I cough quite badly on food and have to be very careful when eating. I think I get my Ataxia from my gran and at the moment I'm the only one with it in the family. I get very tired at the end of a day and sometimes can't be bothered to get up in a morning but always manage at the moment. I've had a few falls but I always blame myself for not concentrating on the task ahead. My memory is quite bad and I easily get stressed but looking on this site it makes me realise I'm not that bad.I get very angry at my inabilities to do things. There are just certain thiungs I can no longer do. I go on an exercise bike in my garage 3 times a week to keep my legs going. On the whole as my dad used to say there's alaways someone worse off. I get a great deal from reading posts from people like myself.
Louise
Louise,
Thank you so much for your reply. Your story gives me hope, family tend to pass away early. Mum was 48 uncles were 39,51 and 52, nana was 52. No one in my family has been out of a wheelchair after their 40s.
My family lived alot less healthier than me however. Do you know what your CAG count is? You're absolutely right, there's always others so much worse off.
Thanks,
Lucy
Hi Lucy
I've never heard of a CAG count am going to see my consultant in January shall I ask them? My grandma died just before her 80th birthday but even though we think she had ataxia she was never tested.I seem to be the only one with it at the moment. I hope I'm a long time before I need a wheelchair but you never know. Keep as positive as you can Lucy and I'm always hear if you need a friendly voice, anytime you need to vent let me know.I read you're a social worker the job must be quite hard for you. I'm in St Andrews where are you and have you got a family?I've got 2 sons and 3 grandkids all seem fine, 2 sisters 1 nephew and 1 neice all fine too.
Louise
It's your CAG repeat expansion count... All technical rubbish i don't understand 
my understanding of it is its 25 or belown you won't have symptoms... If its between 25 to 35 (these are rough numbers) you might get symptoms... If it's 35 or above you most definitely will. My mum's was 39 and mines was 40.
Thanks so much that means alot. I've taken some time off work to get my head around it. I'm annoyed that the diagnosis has affected me in the way that it has as i knew deep down i have it having grew up around it.
I'm in Glasgow so not too far from you. I have 2 younger sisters, one has been tested and has SCA2. My nana, great uncle, mum, 4 uncles and cousin haf the illness, only 1 uncle is still alive.
I have a 7 year okd daughter named dakota, she's bloody wild. She's quite mature for her age given she's seen most of the family go through this so she has an acute awareness of the illness. I'm engaged to the most patient, kind and understanding man so i know I'm very blessed in other areas of my life.
Lucy
Lovely to hear from you Lucy and please remember if you need a vent I'm always here. You always have to look for the positive, there's always something there Although I'm good at giving advice out I don't always adhere to it 
Haha i know the feeling 😊 and it's been lovely chatting with you... I'll certainly keep in touch 😊xx
Dr. Constantini gave a patient with SCA2 high doses of vitamin B1 and claims that the patient's progression stopped and some symptoms improved. He wrote a medical paper entitled:
-
Thiamine and spinocerebellar ataxia type 2
-
Here is a link to the paper that you can print out and take to your doctor:
-
ncbi.nlm.nih.gov/pmc/articl...
-
-
I am 53. Have a CAG count of 42 (but I have SCA1 and the CAG counts that are considered a problem are different for my SCA) BUT I had symptoms and now I have none and I have remained symptom free for almost 4 years now. I take 2.5 g daily of vitamin B1. Here is a link to what I buy:
-
amazon.com/gp/product/B000Z...
-
I also take a long list of other vitamins that I believe are making the difference. I hope you will consider pointing your doctor to this link and see what he says:
-
healthunlocked.com/ataxia-u...
Cheers,
Joe in NY
I was dianosed with sca2 in December, have had symptons since 2014, cant walk anywhere, I shake when getting off the toilet, bump into things, cant use a stick as my coordination is crap,
What age are you? If you don't mind me asking Sally? Do you take any supplements?
Lucy
62, but 42 in my mind, the only thing I take is 12 weekly b12 injections, tried Baclofen, not for me felt sleepy all the time, tried cannibas oil, I am in a black place at the moment and I hate it when people say - it could be worse!
I love your name
Pip
New diagnosis for my 3 year old
Troriluzole. Trigriluzole
Help
