Hi

[Shahidzak]

Morning hope all are well I have just been diagnosed with Cerebellar ataxia plus syndrome MIR SCAN showing disproportionate atrophy of the cerebellar vermis not sure 🤔 what to expect any advice from anyone

[wobblybee]

Hi Shahidzak, welcome😊

Contact AtaxiaUK, you'll be sent an information pack inc info to pass on to your GP🙂

On AtaxiaUK website, there's a list of Ataxia Support Groups, there may well be one in your area🙂

Ataxia symptoms can vary enormously in severity and progression, typically due to the type, or cause. Initially, the most common difficulties are with balance.

I had an MRI which showed Atrophy to the Cerebellum, I was also experiencing other ataxia related symptoms.

The information from AtaxiaUK will help you to understand the condition😊xB

[Shahidzak in reply to wobblybee]

Thank you sorry late back

[HarryB Administrator]

Hi Shahidzak

I completely agree with everything Beryl has said. Do have a look at Ataxia UK's website ataxia.org.uk where there is a wealth of information, including this very helpful leaflet ataxia.org.uk/Handlers/Down... and details of how to contact the Ataxia UK office.

Best wishes

Harriet

[RuthBennett]

Morning I am up at Kings hospital still having tests, they know it is some type of genetic cerebeller ataxia but there are many different types. Also I have loss of hearing in both ears, get the tremors in my legs, arms and now in my head, loose balance have fallen over several times, fatigue all the time and feel nauseous a lot of the time, memory loss cannot remember things. But we are all different hope you keep well. Yes I do get very down and upset with this, find it very hard to cope with. But my hubby is so very supportive.

[Shahidzak in reply to RuthBennett]

Thanks a bit scared

[Litty]

Welcome

Great tips from all.

Everyone different but it took me a while to accept.

Just stay as active as possible for as long as possible x

[neta]

Hi there,

Valuable tips indeed. Good luck. N

[Piero]

The practical advice you've received is very sensible. It's been around five years since my diagnosis and the most difficult factor I've had to cope with is the progressive nature of the condition. It gets worse. Our lives are marked by rituals and celebrations eg birthdays, holidays, New Year etc so its quite natural to compare your condition on one of those occasions with what you were like a year previously. I find that depressing. Nevertheless you have to cope with that as much as the balance problems or lack of mobility. That's the package. Good luck. You'll manage, most of us do.

[Shahidzak]

Evening Piero thanks for the advice live it's self is a challenge

[february]

Dear Shahidzak, A HUGE welcome to this site! Other's advice is so good and I really don't have anything to add. I agree with Piero though, as the most difficult thing about ataxia for me is the progressive nature of it! I was diagnosed with Sporadic Cerebellar Ataxia (unknown cause, progressive, symptoms 24 /7) thirteen years ago, although I had extremely minor symptoms starting about eight years before diagnosis. I try to exercise for strength and balance and eat as healthy as possible! I try to have a positive attitude and concentrate on what I can still do, not what I can't! My best to you..., ;o)

[Shahidzak in reply to february]

Thank you