My father’s brother and his 3rd daughter have been diagnosed with SCA2, I’m positive I have it too. Until now I’ve been reluctant to get a diagnosis for different reasons, but now I’m thinking about it again. Would the benefits weigh out the negative effects?
I feel so lonely and desperate for someone to understand. I am truely isolated (no family, no friends). Maybe that’s why the question of diagnosis is on the table again.
My question is what are the consequences (insurance, etc.) of being diagnosed?
Hi Mellie, welcome
There are opposing groups of thoughts on whether to be tested before experiencing any symptoms.
Has your Father shown any sign of ataxia Do you have any siblings who have symptoms
Once diagnosed with ataxia, it’s a legal requirement to inform the DMV, or DVLA (UK) even if eyesight isn’t effected.
They would contact your Neurologist to confirm whether your condition effects driving. Personally, I’ve had a 3yr renewable licence now for many years.
Holiday insurance is something that usually increases in cost, if you choose to declare your condition. I holidayed for years before my symptoms worsened to the point where I needed special assistance through an airport.
If you are concerned about progressive symptoms, ask your GP to refer you to a Neurologist. Because of your family history this should be straightforward. Ataxia symptoms can make a person feel very disorientated and confused, decision making can be difficult, even trying to explain how you feel can leave you lost for words.
Log onto www.ataxia.org.uk and www.ataxia.org and have a look at the information. Your relatives may already be members, if not and you’d like to contact others coping with ataxia, there are links to support groups throughout the UK.
You don’t have to shoulder on coping on your own, we all know what it feel like
Thank you for response @Beryl_Park. What I didn’t mention is that the disease is from my father side, and was French. I don’t know if my uncle and cousin are members of any French associations. My father died of leukaemia when he was 56 years old and wasn’t displaying any signs of ataxia (according to my mum, but I remember once he tried to ride my bicycle when I was a teenager and fell). I have two big brothers who seem fine.
What are the benefits of a diagnosis?
You may actually be worrying unnecessarily, stress and even Candida can mimic similar symptoms. Seeing a Neurologist can a least give you an answer, because in your case, a specific mutant gene would be the cause. Actually having someone believe you experience symptoms is amazingly uplifting, it’s so easy to feel symptoms are down to ‘imagination’.
It’s obviously praying on your mind, have you spoken to your GP about these misgivings This may sound very odd but, I think you’re fortunate in that you know what type to look for. My symptoms were overlooked for years, my GP put them down to stress, then I became more stressed because they were worsening, it was a vicious circle
To my mind, the ‘plus’ side would be actually knowing one way or the other xB
Hi Mellie, in Canada, most insurances are valid; provided the policies inception date was before the prognosis. In other words you shouldn’t be denied insurance provided you or your medical practitioner/neurologist was unaware of the condition at the time the policy was created. On the other hand, if the condition was known at the time of inception, insurance may be denied/declined.
It was explained to me by my genealogist that, any offspring may be subject to genetic testing by some insurance companies if they show symptoms of the condition, to determine eligibility based on their susceptibility of developing/having the condition based on DNA. So, a person having a known SCA that has passed on the defective gene to their offspring, their children may be denied insurance if they show symptoms, and carry the defective gene.
It was suggested that my biological children not be tested for insurance purposes.
In conclusion, it is definitely a tricky situation with regards to insurance, a slippery slope so to speak.
Unfortunately, keeping a drivers’ permit is another story. Generally it is up to the medical practitioners and the alike to determine if one is fit to drive. They may decide to have you complete any part of the drivers’ exam to find this out. Depending on their medical findings one may be subject to; road testing, eye testing etc. to determine driving competency.
My doctors were lenient enough to give me a grace period so that my GF could complete her beginners driving permits (here in Ontario Canada we are subject to the graduated licensing system, therefore it is required that a fully licensed driver accompany a beginner).
As far as getting a firm diagnosis, that is entirely up to you. There is no known cure for any type of SCAs, only, if your lucky some treatments for the symptoms. So will having a firm diagnosis help? But, at least knowing may give you some piece of mind, and some direction for treating the symptoms. For new insurance policies, it may be too late for that.
You indicated you have no friends or family, you have us now! This site is a great place to meet people and discuss issues we may experience. There are no silly questions, the answers may be already here or you may find someone that knows.
May you have the best of luck, and know that we are just a click away!
I see what you mean by lucky in knowing what to look for. Perhaps what I have is something milder, but something there is. And I know there is something when I walk my kids to and from school looking drunk, when I hesitate with stairs and feel the need to hold on, when I get cramps all over my body (worse being legs and face), etc. But yes I know at the moment I’m lucky because my kids are young and keep me active. I still go on difficult walks with them or at least try (uneven grounds and steep stairs). When I say no family, no friends: I have a wonderful husband (on those walks he is my rock, literally) and 2 very kind and beautiful children. But they are too young to understand. My husband is my everything , he knows absolutely everything about me, which must be boring really. I try not to burden him too much. Poor guy! For some reasons (brought up in France but moving countries to live, moving towns, 2 big brothers-best-buddies-no-room-for-little-sis, not spoken to mother for more than a year, etc.) I ended up in this situation. I know I should consider myself lucky really, it could be worse.
A year ago, I was considering being diagnosed, with consultants letting me know about all the consequences (for my children too) and benefits. In the end I (we) opted for leaving it because I was fearing knowing might make me force myself to slow down and the whatever disease I have catch up with me. I also feel that it will have to happen one day, and I need to reassess regularly.
But slowly, I’m starting to try to get in contact with people who know, and therefore feeling less lonely and isolated.
That is good that you have your husband by your side. I know I would be lost without my GF and family. Stay strong. But know that you often can find answers to your questions here.
I have SCA2 as well. I was just diagnosed last year.
My mother had SCA2 and she really ‘hounded’ me to get diagnosed when I was 20. I refused at that time. One, I wasn’t showing symptoms at that time, insurance in those days would have been cancelled, and most importantly, I refused to be diagnosed for something that was to affect me in 25 years!
I guess it depends on your age. Im glad I waited.
Remember, it’s a tough disease, and it’s no fun getting progressively worse, but SCA2 does not define you!!! Stay strong! Take a positive spin on it. At least you’ll know ahead of time whats gonna happen. The other thing is that there are millions of people worse off than you!!! Never forget that!!!
@Josanjj11 Hi Jose,
I am 42 years old, my symptoms started in my mid-twenties (my brother first noticed, walking behind me) but had no idea about all this until a few years ago. What made you get a diagnosis and when? What are the benefits? Do you have any children?
Take care, Melanie.
My path to being diagnosed started when I was having balance issues, seeing an ENT, and him advising me to go see a Neurologist. I then got an MRI, then genetic bloodwork. It was negative gettin diagnosed, but the only way I can look at it is that my life will be a lot harder, but. Would I prefer never being around instead? Absolutely not! Time to exercise more and try to be better.
I have 4 kids, two of them are in their 20s. I just stress for them to get as fit as possible. If they get it, hopefully there is treatment available.
My mom had it, my grandfather had it as well as 4 of his brothers. I grew up seeing how depressed and beaten they were. I vowed never to be like them. When life gives you lemons, make lemonade!! Once you give in, you’re done!! Keep fighting!!!
Hi Jose, Your very optimistic which is great. But how and why? Cerebellar ataxia is hell…
As I mentioned earlier, many of my family members had the disease and I grew up seeing their depression and failure to see the beautiful moments of life bc they were always focused on how bad their situation was.
I have a beautiful family and I know they’ll have plenty of great moments and plenty of failures. When the failures come about, I’d rather be an option for them to receive inspirational advice to ‘try again’, rather than being someone with a ‘woe is me outlook’.
I was reluctant to get a diagnosis too but for another reason; there is no treatment and no cure.
I did see a neurologist at the urging of my g.p. I likely have a a recessive version probably Friederichs but there are so many variations of ataxia most patients never get a positive diagnosis.
I was lucky to be referred to a neurologist who is open, interested and knowledgeable and spends as much time as necessary during each visit (yearly) to thoroughly review my progress which thankfully has been slow.
If nothing else the neurologist can suggest coping mechanisms and exercises that might mitigate some of you symptoms. Since ataxia is not well understood you might also add to the knowledge base.
Isolation might start to be resolved if you join a help group or become involved as a volunteer helping others.
I live in Canada so my treatment is free of cost, excepting appliances, (rollators, canes etc.) but if you lack coverage there may be ways of getting treatment through your local Ataxia organization who can direct you to programmes that might underwrite the cost.
I hope this helps and wish you well.