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Ataxia UK
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Should I try to find specific type of my ataxia or just live with it?

I was diagnosed in Oct 2012 with idiopathic CA. at the age of 45. My neurologist does not think it's worth finding out if it is a specific type or if it is inherited. I have a 6yr old and am worried. Should I push for more tests or just try & accept and live with it as best I can, which is not very good as I am so confused. Please help.

17 Replies


My ataxxia is the same as yours. I have had every test known to man, all to no avail. During the time I was waiting for the results I worried myself stupid. At least it wasn't genetic.

What you need to ask yourself is what worries you the most, one thing for sure,whatever you can't change it.

I know words are cheap but try not to worry or think about the future. If you need to let off steam we don't mind, we are here to help if we can.

Take care



Hi Fifa,

Thanks for your answer. I think you are right I am just having a hard time coming to terms and dealing with it. Your whole life changes, I don't feel like me anymore. I received the pack from Ataxia UK today and have spent all day reading these pages. After months of feeling isolated I read the posts and just thought 'wow' there are so many people going through it and coping and so many positive attitudes. I feel more upbeat already!

Take care too.



Hello Jonbon

Thank you for answering. I am glad you feel better. It is hard coming to terms wiith this condition and despite what everyone says I don't think you do. You do what you can because you have no choice.

I am glad you have made contact with Ataxia UK their literature is very good.

Just take each day as it comes and do what is right for you.

Take care



I am the same.Like Fifa there are some of us that nothing will change the outcome-then there comes acceptance.Five years on from diagnosis I have seen some find it was gluten or immune deficiency.Then they could do something but for some of us all the tests in the world won't work.All that is left is our thinking and we can choose whether to be positive or negative.I have done things through a process of elimination-cut out gluten-tried anti-oxidants etc.Nothing worked.Now there is acceptance and that is hard but there are positives even in that.I have two grown up children in their 20s.I was worried there was a genetic link but the Neuro can't find one so with relief I think with mine it is just one of those things.I was 47 when I was finally diagnosed.I have 5/6 years to get used to it.I remember how it felt though. Ataxia UK are a great help as Ataxia is a unique problem and does not conform.

Jonbon yoo may have needs they can help you with.


I agree with Fita and Silkwood! I was diagnosed with Sporadic (Idiopathic) Cerebellar Ataxia 10 years ago (I'm 59 now), although I think it started quietly way before I was diagnosed. I had all the tests, accept genetic. which were negative. My neurologist said the same thing as yours, Jonbon, mainly because no one in my family as far back as we knew, had ataxia except me. Even though this was true, I wondered why/if there was a genetic link, even though there wasn't a cure. So last year I had genetic testing for the known recessive types of ataxia, which was negative. I have two grown children and grandchildren, so I know how you feel about you're daughter. I can understand your motives, but agree others, you can't change it. My advice is to live life the best you can, embrace the things you can still do and be as positive as possible! Keep as active (safely) as you can, even though ataxia is frustrating and challenging! This site is wonderful to "vent" on, as well as the US "Living With Ataxia" site (I live in the US). You are not alone in your journey!!! My best to you..., ;o)


Hi to you all and thankyou so much for responding to me.

I have read neta's blog with amazement, you seemed to get stronger with each post and february's responses were just so inspiring, the heels and dancing etc! Reading about everyones experiences and coping strategys has made me feel more positive already. My neuro, whilst being a nice man, does not seem all that sympathetic towards my ataxia so I have decided to get a referral from my gp to go to Sheffield. I have read all the info from Ataxia uk and didn't realise such places existed here as I have not really been given any info from the hospital and felt as if I was just floundering. Even if I don't have all the tests it will be so gd to talk to specialists in ataxia. I am going to a local support group in York, again ataxia uk gave me all the details,so it will be great to actually meet and talk with other ataxians.

I don't feel isolated now hearing from you all, it's really good to share and put it down in writing.

Best wishes to you all.

Jonbon x


Hi there Jon Bon,

Check out whether it's not an auto=immune thing, which is treatable. Good luck



Seems to me that your neurologist might be a bit 'short-sighted'. If you are in the UK why don't you get your GP to refer you to one of the ataxia centres where they could discuss possible causes & genetic investigations with you ?

Whatever you decide to do I wish you good luck.


So glad you're feeling better Jonbon! One of my favorite sayings is, "a woman is like a tea bag, she never knows how strong she can be until she gets into hot water...,ha! I repeat this to myself on a daily basis! Ataxia doesn't "define" who you are as a person. Never give up or give in! We're always here for you, as we understand and can be supportive! ;o)


I like that, I may borrrow it for my facebook. lol x


Hi everyone, I was diagnosed with SCA type unknown in my 30's and I'm now 54. I think you need to try to keep positive (hard sometimes) I've lived in Spain for 10 years, sometimes I feel isolated but reading about other Ataxian's really helps & also reading the Ataxian mag. I have Dystonia too but try my best at things Jonbon. I love cooking & gardening & manage fine. Keep on reading this.

I like the saying about tea bags etc. made me laugh.

Keep well



Hi berejena,

thanks for your positive response. Everyone is so upbeat and determind. I can't keep away from this site! If I'm feeling a bit low( or even when I'm not) I just read all the shared experiences and advice and feel stronger. The teabag saying from february really made me smile too, and I keep saying it to myself, and everyone else!

The fatigue won't go away, it's a real nuisance having to rest all the time during the day makes small tasks take ages. Am trying protein shakes but no miracle energy boost. Anyone got any tips on how to boost energy just a little? I am doing all the recommended exercises too.

Take lots of care



Hi Jonbon

I was diagnosed with Ataxia over 20 years now and despite many tests, the cause is still unknown. I am 36 now.

I think your original question is an important and interesting one. There are a very small number of ataxias that are treatable and as such it is essential that you are tested for those. Beyond that I think the decision of further testing is a personal one. I personally am not desperate to know the cause of my ataxia, particularly as yet there is no treatment or cure. The most important issue for me is learning how to manage and cope with my symptoms on a daily basis. However I do not have children and I can only try and understand what a worrying and confusing situation that must lend itself to.

I am delighted you have made the decision to ask for a referral to Sheffield. You will be well looked after there. It might be that a cause for your ataxia cannot be found but you allowing yourself the best chance to explore every possibility. Make sure you write down any questions you have before you go and give yourself the opportunity to ask them.

Best Wishes



Really glad you are feeling a bit better. When I first found out I had ataxia, I needed to know everything I could. I find the forums very helpful. I use this one, the other Ataxia UK one ( ataxia.org.uk/forum/ ) and Living With Ataxia ( livingwithataxia.org ). All full of excellent tips.

Everyone is very individual and copes with ataxia very differently. Time does help though.

My story is a little different because they do know what sort I have (SCA1) and it is hereditary. Back in 1995, my Dad was one of the first people to be tested (the doctors thought he had had a stroke). Unfortunately,he had SCA1 and they offered to test me and my sisters (we have 50/50 chance of inheriting the gene). I decided to accept since I had 2 young children. We had some excellent counselling from the UK Genetic Testing Network ( ukgtn.nhs.uk/gtn/Home). The Ataxia Centres offer this. I decided that I did not want any more children and was sterilised. I am really glad that I did not know that I had the faulty gene when I started my family. Our kids have pointed out that they might not be here and my Dad might not have had me either, if we had known. Our ataxia is not good but at least I am still here (a few relatives and friends died in their 20s from cancer and heart attacks). Once our kids turned 18 (now 24 and 22) they could be tested but decided not to because our ataxia will not start till they are in their 40s and they want to get on with their lives. If they have it, hopefully there will be treatments too. Also personally I found that that knowing you definitely have something coming is very hard to come to terms with. You do.

My one sister was tested and was negative, luckily. She did find it very hard though and had a breakdown. The other sister decided to wait. She started developing symptoms and tested positively in her 40s.

Dad died after an operation, due to aspirating in the recovery room. The doctors told us that if any members of family with ataxia had operations be sure to warn the hospital of weak throat muscles.

We all cope and have very different ideas. If you do decide on testing, the counselling before, is very good.

Good luck with whatever you decide : )


I would just get on with life if I were you. I was diagnosed with Ataxia but no-one ever told me what SCA I have etc. I was with my Doctor at the hospital and was told that I have Ataxia but that was it. I have not seen anyone about it since, which was 2006 possibly. I also am H.I.V. Positive but although there are 5 main strains it doesn't make any difference which strain I have and won't make any difference if I knew as I leave it to the professionals to deal with and the same goes for the Ataxia. Good luck whatever you decide. Ivan


well, I just live with "my" ataxia. I realize it´s getting worse-

thats more than enough


1 like

I am amazed at the number of people who talk about ‘my neurologist’ or medical tests/assistance, whether any good or not. I was diagnosed with Idiopathic CA 3 years ago at 63 and signed off. I had to look it upon the internet and was horrified. NowI I just help myself and keep positive. As much as I’m asked about it, no-one truly understands. I used to be super active so it hit me hard. I cannot imagine coping with a young family. It must be so difficult! My CA has progressed and can no longer write, even typing is hard work. Some days are better than others as are some nights. I am pleased I found this forum, I feel less alone. Keep smiling 🤗


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