How long have you or your relative/friend been d... - Ataxia UK

Ataxia UK

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How long have you or your relative/friend been diagnosed with ataxia?

HarryB profile imageHarryBAdministrator435 Voters

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51 Replies
Cathytw profile image

I was first diagnosed with ataxia as was sent to see a geneticist by my gp he had all m mums history about my mum and other relatives who had it did blood test. On me and my mum they don't know which one we have my brother has been diagnosed about 3 years ago by neurologist

I'm the only one in the family so far that has ataxia. Since being diagnosed 3 years ago my symptoms have only worsened slightly.

KAWIKA profile image
KAWIKA in reply to

I also am the only person in my family with ataxia. Diagnosed a few years ago, my symptoms are pretty much the same, and have not changed. My neurologist believes I am doing good. I asked him if he thought I would get worse, and have eye problems, etc. He is running a 2nd MRI next week I will post the results.


I`m approx 3 years, my brother is longer about 5 years. My symptoms were probably longer but my GP kept sending me to different hospital dept`s through no fault of his own until I was referred to Professor Chinnery of the RVI Hospital (Neurology). And everything came to light there.

And since then - unfortunately - my symptoms have progressively worsened.

suzieg56 profile image
suzieg56 in reply to

Have your symptoms worsened severely since then and do you get any health or benefit relief

scruffycat profile image

Well, not diagnosed exactly. That, it seems, would be a step too far.

macmike profile image
macmike in reply to scruffycat

Why would it be a step too far?

scruffycat profile image
scruffycat in reply to macmike

Put your head on the line. It seems very hard to do, and take.

KAWIKA profile image
KAWIKA in reply to scruffycat

I would like to know why you think you would be putting your head on the line. I am open to any suggestion and any help.


february profile image

I was diagnosed with Sporadic Cerebellar Ataxia 10 years ago, at age 49, although I had small symptoms starting in my early 40's. No one in my family, as far back as we know had/has ataxia, except me. I like to think I'm "special"...,ha! I had genetic testing for the known recessive types of ataxia, which was negative. My neuro would also like me to be tested for the known dominant types of ataxia, so he's checking into it. The only reason I would agree to be genetically tested is, it may help research or someone else down the rode, and I'm all about that! In my heart I do not think my ataxia is genetic, it just happened for an unknown reason. Although my neurologist says I don't have Gluten Ataxia, I've thought about trying a gluten free diet for a while to see if that makes a difference. I've been tested for gluten sensitivity/allergy, which was negative. I've heard that one can have Gluten Ataxia even if they have no gastric symptoms...,who knew? At this time I try to eat as healthy as possible (lots of fruits and veggies - organic) and I exercise for strength and balance. Although my ataxia has progressed exercise has helped as, if you don't use it, you lose it (for me that's true!). ;o)

Rimjhim97 profile image
Rimjhim97 in reply to february


I am the same case and undergoing treatment of Dr. Sumit Singh in Medanta N Delhi India.

Dish profile image
Dish in reply to february

Hi there my husband was diagnosed with cerebellar atrophy also known as ataxia 8 years ago,it has been progressing and he's in a wheelchair,wearing diapers in the last year he's now 63years old. I don't know anyone else with ataxia and I'm getting more & more stressed out as his condition progresses,he's now choking even when drinking water,he can't even lift himself up on the sofa and needs care around the clock. i believe I am more stressed than he is but I try not to show it,I almost had a nervous breakdown due to stress & worrying about him and I have no one who really understands. Do you have any advice that might help me cope?


KAWIKA profile image
KAWIKA in reply to Dish

I'm so sorry Dish. I am 75 yrs. old and it has not progressed more than instability of my legs. I am in a long term care facility, with my wife who will have major back surgery as soon as they are able to schedule the surgery. Are you able to locate a similar type of long term care home? Medicaid pays for almost everything. Just keep the pressure on care homes and Medicaid in your area. Good luck to you and your husband. Please let me know what happens next.


mhairi26 profile image

I was diagnosed nearly 2 years ago at the age of 40, 27 years after suffering the first symptoms. I actually diagnosed myself on the internet, my neuro sent me for genetic testing and the rest, they say, is history.

wildone profile image

The problem with this is... having the 'symptoms' of ataxia and being diagnosed with ataxia are different things, so the date you were diagnosed is a bit misleading. For example: me. Diagnosed 11 years ago but have been symptomatic for 20 years.

I have to alter my initial post. On further checks my diagnosis was in 2011 so that makes mine approx 2 years and not 3 (even though it seems like ten some days :-( )

murcia profile image

I sta

murcia profile image

I started showing signs when I was 21 am now 55 been in wheelchair

wibblywobbly profile image

I was first diagnosed in 2010 with genetic type of SCA - type unknown. Was getting progressively worse and last year was deteriorating at an alarming speed. However this year it seems to have stabilised and i can slowly do more and more. I never did stop trying before this year but was def more and more difficult. Now i can really see the sense of "use it or lose it" as the more i do repetively, the easier it is.

Neddyl profile image


My father at his age of 56 was diagnosed with SCA but we don't know which type it is. He used to drink alcohol to much, I would say like an alcoholic abuser. We don't know whether the cause is genetic inheritance or alcoholic abuse as no one in the family has SCA. Now he has been having slurred speech, clumsy movements which gradually progressed during this year. Currently, I have been suffering from dizziness and some strange sounds in my ears. I'm afraid that I could be inherited SCA from my father if it is due to genetic problems. I have gone for many tests and diagnoses (even taking MRI scan) but doctors could not specify the disease. They concluded that there is a problem in blood circulation in my head. Any advises for my case? I cannot do a genetic test in my country and don't want to live with this anxiety anymore? Any comment would be really appreciated.

BpurceA profile image
BpurceA in reply to Neddyl

Do not worry you are looking for an answer to the impossible !

You are not alone I am54 with 3 kids who increasingly despise me!

CA does that

Buy a Ipad and be quiet but don't worry!

Think of the people who are worse off than y ou!

WalterWillingale profile image

Hi, I was diagnosed with severe truncal ataxia two months ago after I developed this condition following Gamma Knife Surgery to shrink my brain tumour.

GEOFF1956 profile image

Far as I can remember they was both not young but it was never picked up straight away of the reports. Then with the amounts of falls and clumsiness the GP was not happy the way things began to go. so at individual times had a scan it was at that point they had to travel outside the county one of my family stayed in the hospital but never came out alive. she had a rare uncontrolled gene at the time was rapidly out of control one night while sleeping died with the rare symptoms saying it was ataxia but no tests was available at that time. It was the similar again the same but while in a different hospital a neurologist said the place of diagnoses as deteriorated and she was just sent home saying we have a gene which you have repeated the same words no test as been diagnosed Nine months later due to ataxia nothing could be done. they had ataxia 11 years. i am concerned has I am worried deep down but I have got to get on with it with continued spasms and when I have a grand mal seizures my upper body feels it had stretched apart. My sensory have taken time to adjust with my twisted spine in turmoil and spasms. 12 years ago I was diagnosed with cerebellar which is starting speed up. But who knows tomorrow we may have a treatment to sustain .

AnneMenzies profile image

It was over 45 years ago when I Was just 6 weeks old I stop breathing 3 times and the Drs had to start my heart and I was very ill but I don't remember all the the Ins and outs of it all

neta profile image

I just saw this now in end of June 2015. I was diagnosed in 2010 but by 2007 I had sufficient symptoms to see an ear doctor. (My hearing is fine.) Maybe it existed even before that. I have CA induced by autoimmunity, the neuro thinks. There has been a steady decline, Slow (sometimes not) but steady.

Jenny789 profile image

Cerebellar Ataxia was diagnosed over twenty years ago. It is only recently that I feel that it is affecting my mobility. My gait has always been affected but now I feel weak when I walk and very 'unbalanced'.

Tonyf profile image

I went to the docs years ago about weakness in my legs, but the never pick up Ataxia.....???

Gallanp profile image

Saw my G.P. and she referred me to Neurology, got to see the consultant in July this year, waiting on a date for a C.T. scan, results of Blood tests.

Only department which was quick was The Eye Infirmary.

Still waiting for a diagnosis but they take time so they say.

Sisters-in-law profile image

Where can I read more about recessive and dominant forms of the ataxia gene? I have been looking online and that gave me the impression that there were only recessive forms - but this discussion is mentioning dominant genes. How do I find out more?

Pec2884 profile image

Only one in family. Lack of family history

Cubsfan profile image

I have late onset cerebellar ataxia due to head trauma suffered 18 months ago

auntiesally profile image

12 months

auntiesally profile image

0-2 years

Dish profile image

Please get in touch to share information on ataxia for the patients partners who are normally carers I'm really stressed out as a carer


february profile image

Update on my last post: I was diagnosed thirteen years ago with Sporadic (idiopathic) Cerebellar Ataxia (unknown cause, progressive, symptoms 24/7), although I had very minor symptoms starting about eight years before diagnosis. My neurologist thinks all ataxia's are hereditary, although no one in my family, as far back as we know has/had ataxia, except me. Over the years I've had genetic testing for the known dominant and recessive ataxia's, which was negative. Last year I had genetic exome testing, which was inconclusive. I'm 63 years and my first neurologist (he retired and I see his replacement now) always told me, "someday the cause will reveal itself". I have no idea why I have this. My best to all..., ;o)

AnneMenzies profile image

I was first diagnosed whan I was 6 weeks old in June 69 and I am 48 next month. (I died when I was a baby

bevvick1964 profile image

No one luckily my

Ianseph profile image

About EIGHT years ago. F,or the last three years I have been wheeivcgair bound.

Woodturnerman profile image

Hi Harry

I was first diagnosed ten years ago but the neurologist did not know much about the different types. I got a definite diagnosis last December at the John Radcliffe

T1abj profile image
T1abj in reply to Woodturnerman

How many times did you go to JR?

TimLowThom profile image

One of the first in the studies of research!

haylzowl profile image

My auntie was diagnosed 3 years ago she's probably had it for years and explains now why she has been falling over all these years, my moms now finally had the courage to go and get checked out and has been referred as its a strong possibility she has it as there are more of her siblings that have been diagnosed since, I am now showing symptoms and undergoing tests

123geoff profile image

18 yrs how quick time goes, I know with the rare type I became severe blind, deaf, mute, spinal posture change. I am a person who does not dwell but have an understanding that everyone treats me the same. I have a very loving family and that is all that matters, for the love you can not buy but share. I am myself and enjoy life to the full with all the abilities I have I use with common sense.

Magicalwomanz profile image

I have been diagnosed for 10yrs or so and I have sca type 6 b good if people could state their types of known as I would love to connect with people with same condition as me .. also I emailed ataxia uk in london to ask for a ID card/wrist and that states u have ataxia as often people think I am drunk when not lol so good to have something to prove it x

littlelegs914 profile image

My mam found a article in a Sunday magazine .headlining my life as a sober drunk,she said Lindsay that’s us. I called the number and was assisted by ataxia uk. Until that point we just lived with it as you do.🙈

ringotheflamepoint profile image
ringotheflamepoint in reply to littlelegs914

Sober drunk! A good way to explain ataxia to someone. I have said my body acts like I'm drunk, but I'm not.

murcia profile image

I have Friedriches Ataxia diagnoseď in 1989, i have a sisteŕ with it 8 years between us both diagnosed at samè time,as they didnt know what i had.

Quite honestly it wàs a case of youve got this,get on with it.

I had 2 young childreñ tò bring up,but we got there,got a wonderful husband.

Worked til it became to much

Dròve until i was about 51 gave up because i didny feel comfortable anymore,being in à wheelchair now fòr 11 yeàrs,travel as much as ì càn,just became à Greatgrandmother & went to M

Madrid to watch Champions League Final as we were in Spain on hoĺs anyway

Piero profile image

Diagnosed eight years ago. Condition has progressed in text book fashion.

weegiz12345 profile image

Hi Harriet

How are you? I went to see about retyring through ill health and although the doctor said it would be no problem I have to be worse than I am now. My line manager has to be concerned about my duties and I have to be finding things more difficult tha

weegiz12345 profile image

than at the moment.Answering your question I've noticeaby had Ataxia for about 10 years. I was very lucky in that they found out which type SCA2 through a DNA test in 2010 in about 6 months. I wasn't too bad to start off with but this last year am noticeably worse. Who knows what will happen? Only thing that keeps me going is the thought there's always someone worse than me.


phyllis2009 profile image

I was diagnosed 11 years ago. Idiopathic SCA. My brother has just been diagnosed with the same. He was showing signs 2 or 3 years ago. The strange thing is he’s my adopted brother so not blood related.