Cerebellum Ataxia after a Viral Infection

[-marie-]

Hello everyone 😃

I have been diagnosed with cerebellum ataxia after having a viral infection. I was wondering if there are any other members who have had this diagnosis and what there recovery was like?

I am suffering still with dizziness and nausea and severe fatigue and weakness on my left side.

Thank you

Marie

[Jenny789]

Hello

I was diagnosed with Cerebellar Ataxia twenty years ago! It has not been cured but it has progressed very slowly.

[-marie- in reply to Jenny789]

Hi Jenny789

Thank you for the reply, did you get your diagnosis from a viral infection?

Marie

[Jenny789 in reply to -marie-]

No, it was from various symptoms and my doctor was unsure what it was so I had various tests and it turned out to be CA.

[sylviagreenhalgh]

yes I got ataxia after a flu type illness in 2011. In some ways it is a relief to be told what is wrong with me but it is hard to take and I was finally diagnosed by a lovely neurologist in 2014. had years of not being believed there was anything wrong with me. had no feeling in my feet and legs so docs would stick pins in my legs and ask if I could feel it- of course I said no and they said are you sure? it makes you doubt yourself. I have gone down quite quickly in the last- year can no longer walk outside- a stick is useless I just fall over so I have a frame with wheels that collapses so I can put it in the car. I drive short distances locally but DVLA are still trying to decide if I could keep my licence or not. My partners of 21 years left me as 'he did not do illness' and he met and married someone he found on the internet. try to do something you enjoy- I enjoy reading, I go on coach trips every so often although it is tiring. I can no longer manage public transport. I hope to go to Lourdes in Sept- not that I hope for a miracle but it will give me a boost. I have a wonderful home help- make sure you aske for the help you need- after 6 months I am having a wheelchair assessment but I know it takes a long time. I have good friends who come and see me but several 'friends have dropped me as they find the condition embarrassing. My home is ataxia friendly I have a stair lift, use a wheeled walker indoors- keep smiling even if you feel like swearing. we are lucky to have a centre for disabled near here and they put on classes- pottery etc. I went to a tea yesterday organised by local charity. everyone was a lot older than me and less disabled as far as I could see- everything that anyone suggests to you do it- you never know what it could lead to and it gets you out of the 4 walls . keep on going and enjoy the life you have- you are a long time dead !!

[-marie-]

OMG you have had it tough, I was hoping to hear that they had made a relatively good recovery with no outstanding issues as I have been reading a lot on the internet and it said you can recover within 3 months.

I am coming up to my two month stage and seeing positive outcomes but no were near what I used to be and struggling seeing myself going back to the job I am employed to do.

Can I ask, did you just never get any reduction on the symptoms you had after the flu or did you feel you where getting better then within time started to show more profound symptoms

Regards

Marie

[sylviagreenhalgh in reply to -marie-]

it is hard to say if the symptoms started after the virus or perhaps they had been there already but got worse. I try to get out and about- eg yesterday I drove myself to church and a woman said she would help me to the car and tried to put me in the passenger seat so I had to say I was driving and she was very shocked- you have to laugh rather then cry!I always did a lot of walking and not being able to walk outside is very hard. Last time I went in the garden to hang washing out ( July last year ) I fell over and the police came and picked me up. as everyone that was on my contact list was out/on holiday. the personal alarm I wear round my neck gives me confidence . the swallowing is a real problem that started about 12 years ago and nobody knew what caused it - I just have to drink a lot of water when I try to eat something. The speech and language therapist is very helpful. I used to help people who had an infant death on a helpline but can no longer do that as my speech goes funny when I am tired.Just keep going and do the things you can do.

[Ackee]

Hi

It also depends what type ataxia you have, all the symptoms are different.