First thanks for this group it can be triggering but also bring some positive thoughts !
I’m 22, and in june after 3 appt with neuros bc of weird Symptoms, one of them wrote this word on the paper « mild legs ataxia » and said nothing else. Since that time I didnt have an another appointment because I’m afraid of.
Since birth I think I Never had a good balance but I had a normal childhood and did baskeball, boxing etc… But for exemple I always trigger a lot being on one foot, or with some gym exercices Like jumping jack due to coordination (I was lost immediatly xD). But I always thought I was just clumsy or something like that, it wasnt disturbing). Since January 2023, I was in a very dark place. I started to twich, having Jerks, a lot of tremors all limbs even my back sometimes when I sit. I saw plenty neurologists had EMG, brain MRI they said nothing appart this last neuro who did the complete clinical and wrote :under limbs ataxia. What does it mean ?
(also my sister is 13 now we do not have the same father but she also struggles more than me since always with running in the stairs, bike, coordination…).
Since few months I also experience pain everywhere and specially back, knees, hands are stiff…)
Now I don’t know what to do, Symptoms are always changing some good days and other i can walk without drunk feeling or looking at my friend and than « boum » bumping into her.
I’m sorry if its messy, i’m confused i don’t know what to do, i know something is not right with my body and its not since yesterday (as I said with my mild balance issue and my sister very pronounced clumsiness.)
Thanks for Reading,
Eva
Written by
Evagdnn
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Thanks for sharing! I have recently received a diagnosis of Cerebellar Ataxia and I felt very similar to what you described before I managed to process it all. ataxia.org.uk/about-ataxia-... This video is very helpful and so is this charity. Have a look at these resources and then feel free to message me.
There’s of course something wrong and the people in the know should do the best to help as much as possible. I would push as much as possible to be seen by the right people and don’t stop until you are satisfied, it’s your health and your right.
There’s a lot of stories of people been pushed off and suffer more than you should.
You can always get help from ataxia uk and you have plenty of battle partners on this website.
I first got diagnosed a year ago and I am still having tests to determine the cause.
I am sorry about your diagnosis and am sure you’re still in shock. Everyone is affected differently and at different rates. So I agree your neurologist helps get the tests to find the cause.
Ataxia UK and here have been great for information and support. I try to keep doing the things that give me joy, and keep as active as possible.
My next plan is getting to London in June to hopefully get some genetic testing and information not available in NI , see some friends and get to the theatre while I’m there.
I really don’t know at the Beginng she thought it may be something viral because of the various Symptoms but when we consider my childhood, my sister « symptoms », and the fact that this appointment was 1 year ago and nothing change it is Not possible my Point of view…
I was just the same as you were during my childhood. My balance was atrocious and I just thought I was clumsy.
My balance got slowly worse. I've been diagnosed with cerebellar ataxia from MRIs, EMG in London. I even stayed in the neuro hospital @ Queens/Russell Square & saw a neurologist many yrs ago. It's very scary cause you're not told much.
As ppl have said, Ataxia UK are very gd & I urge you to see a neurologist who specialises in Ataxia. I saw Professor Hadjivassiliu in Sheffield. Ataxia UK will be able to help you.
If you can, try to get a genetic test too, it may help.
I'm in my 50s now but was diagnosed with cerebellar ataxia in my 30s. They've never been able to exactly pinpoint the exact rogue gene that I have but keep on trucking, as they're always finding new genes that may be causing problems. I also have dystonia & it causes tremors (& possibly stiffness) so that might be worth mentioning. I have been prescribed Gabapentin which is used for a lot of ailments - look on the Internet.
Many years ago I did a lot of research, so I was well armed. Bear this in mind. Do your homework & ask questions of professionals. Remember a lot of ordinary Dr's & ppl don't know what it is or understand but neurologists should. Some are better than others tho.
Don't despair. Challenge everything & remember not all issues are down to 1 thing. Plus everyone is different.
Keep your chin up & keep smiling. This goes for your sibling too. Take care.
And what concerns Ataxia UK : I m french ahah and live in Paris for 6 years. I’m here because I didnt find anything about ataxia in the « french internet »…
If I may : you were diagnosed 20 years ago and probably always had ataxia bc of your childhood, how are you know, is your ataxia very disabilating ? (Sorry if my question is a bit « out of the blue », and sorry for my english too btw !)
No problem - I didn't tell you because I didn't want to frighten you & remember just because I am like this, doesn't mean you will be. Everyone is different.
Not long after my diagnosis, I used to hold furniture & walls etc in the house & a walking stick outside. I managed for a lot of years. Then I progressed to two walking sticks inside & out, then a four wheeled walker (they call them rollators here - it had a seat inbuilt which was useful as it allowed me to sit when I got tired). I also used an electric scooter (buggy type) for long journeys outdoors because I couldn't walk far. Now I have to use an electric wheelchair both inside and out because I cannot walk. My balance is terrible & I had a serious accident, so when I left hospital, the therapist thought it was best not to train myself to walk again because I might fall & hurt myself even more. That's partly why I am in a wheelchair for safety. It does not mean you will be necessarily.
All I can say is to listen to your body. Exercise safely but keep moving. Do not overdo anything & try not to do two things at once - try to focus on one thing because your brain can't always cope.
I use a metal straw & a cup with a spout because of tremors & swallowing issues, plus I don't tend to use the telephone because my speach isn't good but not everybody suffers from the same issues.
I also take a supplement called Coenzyme Q10. It is because I did a study many years ago & this supplement was thought to help.
A lot of people follow a gluten free diet & claim that helps because some ataxias are caused by gluten in foods. I have never tried this but you have nothing to lose. It's healthy.
I try & eat healthily & eat a lot of nuts, fruit & vegetables.
There are hundreds of different ataxias. I don't know if you know but it's from the Greek word 'Ataxis' & just means 'lack of coordination'.
If you can look on the Internet at 'walking with ataxia' - I can't remember the mans name - I think he's called Claus but I might be wrong.
Do keep moving safely, they do say 'use it or lose it' & this is very true but definitely listen to your body. DO NOT push yourself too much & always do things safely.
I cannot stress enough to keep healthy. The better you feel the more you can cope with any illness. Find what works for you.
Apologies for the long reply & I hope it's useful & understandable. Remember to keep smiling & stay positive. It helps you a lot 😘 X
I have had SCA-7/43 rept for more than 10 years now. I'm 56, damn old half dead one can say.
I'm still mentally in a very good condition. Physically quite medium. I can walk with my legs slowly with human or sticks support.
Anyway, CBD clearly helps me. I been taking various doses weekly for 5-6 years now. After 2-3 days it helps with balance quite much. I recommend to try, although it's not that cheap, 60-90€/10ml. 20-25% oil is quite ok, not stroger or weaker. The muscle relaxers are not good for me. They cause malfunction and uncertainity of the nerves and muscles.
Second thing I never tried unfortuately, now it's too late.
Is Japanese medicine TRH Analogue Talterin was pointed me out by a Finnish neurologist.But at the same time he warned me that it may be difficult to get it touvh with the medicine.
When you Eva seem to be young you may be able to work your way out to get in hold with the Japanese medicine. As far as I understood the medicine is against the hormone wich causes the reduction of the cerebellum of the ataxia patients.
Hi, yes it's very worrying and scary too. The unknown and what you might be facing?
Some on this sight might not agree with me but the time it takes for a diagnosis has to be balanced with how progressive your symptoms are. My belief after doing lots of research and reading papers when a friend told me about gluten ataxia, I tried a gluten free diet. Not easy and of course because GF then testing at Sheffield Ataxia clinic will not give you a diffinitive answer to having GA. UCLH at present don't do this test nor is it available elsewhere.
I weighed up the pros and cons and decided for me a label was not as important as stabilising Ataxia. I knew quite quickly that an autoimmune reaction to gluten was my cause of ataxia. There is no medication involved you just simply change your diet. Over 3 years later I realise GF is more of a lifestyle and not easy to stick to 100%. But I still do.
Neurologists that believe in gluten ataxia are in the minority although I would still run it past yours. Mine said he "didn't believe in gluten ataxia".
Weigh up the implications carefully, speak to the helpline at Ataxia UK but this is a decision you alone have to take. For me it was and still is empowering.
Like I said, I knew quite quickly that it was the right route for me but we are all different.
Check out Coeliac UK website and neurological conditions. PubMed for papers. Professor Hadjivassiliou's research and decide!
It’s important to know that there’s a lot of different sorts of ataxia, I have SCA 6 and there’s over 50 other types and even if other people have SCA 6 the same as me there will be differences in how we are effected.
It took over two years and three Neurologists to diagnose my problem.
I forgot to say, you may think I'm stupid but singing is not only good for the soul but a good thing generally. It's been proven that music is brilliant for the 'feel good factor' as well as the brain, if you go to a choir or something it's social too.
Oh & look on YouTube at physiotherapists called Bob and Brad. Very good. Bob has Ataxia now.
I went to Paris when I was about 40, with my boyfriend. We saw the Eiffel tower & other landmarks. We stayed near the Champs-Élysées & the Arc de Triomphe. Fabulous holiday.
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Dealing with Episodic Ataxia.
help I am scared of losing everything
Help
ataxia, as a way of life, ugh
