Cerebellar syndrome

[Senoja]

Was diagnosed with this ten years ago. Viral based cerebellitis, would recover in a year. It didn't. Has got worse over time, and then because of poor balance, had a fall and broke right hip and right shoulder. November 2015. Struggling to avoid becoming bedridden at all costs.

Trying to get 1. Proper diagnosis

2. Medical advice

Even acknowledgment would be a bonus!

Don't think it's genetic. Does anybody out there know of a decent neurologist?

I live in north Wales so sorry to say medical services are appalling.

Any ideas welcome. Thanks in advance.

Senoja

[wobblybee]

Hi🙂 You could ask your GP to refer you to an Ataxia Centre. Sheffield or London may be your options. It would involve travel but you'll definitely see expert Neurologists🙂 xBeryl

[TedTom]

Agree with Beryl re Sheffield if you can get there. Expert neurologist who is also lovely plus great support offered from rest of team. Good luck x

[Anitabach]

Sorry, I can't help! But if it's any consolation I also live in North Wales and have finally had an acknowledgement from Ysbytty Glan Cwyd asking me to phone for an appointment which will be 6 to 8 weeks hence. That is only to rule out Meniere's as well! Coincides with my husband going into Liverpool for heart surgery, so no can do. In the 15 months it's taken anyway I've got so much worse that I can't travel very far at all and Glan Clwyd is about 60 miles each way. In my case I believe it to be genetic as my mother had all the same symptoms, but nobody knew what it was in those days. She also got dementia. That is not typical I believe so I wonder if anyone else has experienced dementia along with Ataxia.

It's go it alone as far as I'm concerned. I am fed up with the NHS.

[Lemondavies2015]

You need a diagnosis! Your gp needs to refer to the appropriate neurologist and get gene tested! Contact ataxia uk, to see if they can advise too. It's ridiculous that you can't get any help!! Good luck x

[sylviagreenhalgh]

it took me 5 years to get diagnosed with cerebellar ataxia and normal pressure hydrocephalus. I asked for a second opinion via my GP . I had a shunt fitted in December to drain the hydrocephalus and now instead of being in a wheelchair I am back to walking. travelling by public transport and now back to driving. you just have to keep asking- your GP is the first port of call. There is an ataxia centre in London and elsewhere- I found the ataxia charity was the most helpful giving info and advice and they have local groups too. look after yourself Sylviax

[Mermaidia11]

Bless you Senoja, what a rough time you have had and how the NHS have let you down. So far. I hope you feel a little bit better?

I broke my wrist and cracked a few ribs and got concussion this year, I can't imagine what a broken shoulder and hip must have been like ! I hope that your injuries are healing. How are you doing now?

You are right, you need to swerve becoming bed bound, even though it is going to be hard.

Your doctor can refer you occupational health services/ physio who can provide you with a Rollator/wheelchair/shower chair etc practical things to help you keep your balance and hopefully prevent any more big falls.

At the same time, you could always also ask for a referral to Dr Alusi, tremor specialist neurologist at the Walton Centre in Liverpool.

I have been to see her (she diagnosed my ataxia after 30 seconds with her and is a lovely lady) and I am guessing that she is the closest to North Wales to you? They don't have a cerebellum ataxia neurologist at the Walton Centre any more, he retired.

As many have a set here, Dr Clouse- walking with ataxia does brilliant balance exercises to help us to stay up right. Check him out on U tube. I do them every day, they are better that the physiotherapist suggested as well and I am making slow, but positive progress

Your local social service Can also be engaged to do a full assessment in your home, and then provide you with some help and support, whether that be a care assistant or or a direct payment so you can get some assistance yourself, think about getting them involved now, as they take ages?

You must be so frustrated and fed up. But you are clearly a fighter and have not given up, so more power to you!

Hope this helps, good luck chick x

[Guyb]

Hi I suffer ataxia and epilepsy amongt other things best neurogosit is a professor Marios can't remember his last name he's at Sheffield ataxia centre royal halamshire hospital Hope it helps