May I pick your brain?

My brother went there it is supposed to be the best place he still goes back he was in 9 months 5 months rehab they changed his life without them he would not be hear he had an auto immune Cancer that started of with falling over and pins and needles (It's called POEMS disease quite rare he had 1 lot of cheamo 10001 tests a spinal tap and MRI (which showed inflammation of the brain )Then they got lucky they did a bone marrow biopsy (hit a tumour in his pelvis/hip bone.He had very good treatment (I not sure about Ataxia but when he was in rehab they had lots of different diseases )He was told he wouldn't walk (it left him with pilifiral neuropathy)He still has it but has gone from unable to stand or even pick up a glass let alone feed himself to getting on with work (Traveling got married had a child to add to the gang)He keeps In touch I think with 1 patient this is 8 years on.He goes back ether their or I think Royal Marsdon for checks.But you best ask someone who knows I am in the dark myself at the mo.

The National neurological hospital in Queens Square, London.

Diffinately the doctor at the clinic is very-committed and gives you lot of time in your appointment to really understand your problems. She will also make revalant tests and referrals. So if you can get there DO

Good luck

Thanks for your feedback my lovely, take care Staggy1

My husband see's Professor Nicholas Wood at Queens Square, for his, late onset, cerebellum Ataxia. Diagnosed in 2014. He is a retired (fortunately, police officer). The whole unit is fabulous, they are undergoing a project involving 10,000 Ataxia patients in U.K. My husband is 55, he fell recently, breaking 5 ribs in 7 places. He doesn't use walking aids as he is too proud! Silly man! He is now on morphine which means he now walks, as in toddles, like a 2 yr old! Walking aids are a MUST! Don't be proud! He fell in March 2017, has flail chest now, and is STILL waiting for a thoracic surgeon to fix his displaced ribs. I am on a carers break (nil pay), can't get carers allowance (as I am employed), until he gets an operation which could be 5+ months in future! If you have Ataxia, please, please, look after yourself and your family. Don't be proud, accept that balance is impaired, speech is slurred and you need help, before you fall and need life saving surgery!

Hi Kym

Since I was diagnosed in 2015 I haven't seen anyone about my Ataxia. I wrote to the neurologist in Cambridge and Peterborough and enclosed a copy of a diary of events and said that I didn't want to visit them again and waste my time or their time 'for a chat' as I they wouldn't have anything to offer me. I know my mobility is worsening and although I don't need walking aids yet I'll make an appointment to see if they can suggest making life any easier with this disease. In the meantime you keep strong and I'm sure your persistence and care is appreciated...

I did years ago [1982!!!]. I was diagnosed with Friedreich's Ataxia. This, was b4 the blood test that there now is, It has [in October last year] now been confirmed. They did get it right!They were brilliant with me and I was quite a celebrity, having such a rare disease was 'displayed' in one of their lecher theatre's as an example of F.A.. Back then I had a Prof. P. K. Thomas

Thanks so much for your feedback - that's really helpful.

I've been there lots over the years. Saw prof nick woods. Not sure if he's still there or perhaps retired now. If u live nearby it may give you a little peace of mind. I see an ataxia specialist now which may be worth considering. There's a few specialist ataxia centres. Ataxia UK will be able to advise. 🤗

Yes I go regularly and I see Dr Giunti I go most years for last 10 years. If you are not sure what kind of ataxia you have perhaps they can test you? Ian normally ring’s her secretary for an appointment. My theory is by going they know me and if some treatments are found I am on the list. They have lots of doctors and nurses that can help. For instance my eyes were playing up and I was referred to a lovely doctor. Also my son was tested there.

If you go regularly travelling can be hard.I do not know where you live and how bad you are but getting there is a nightmare. We used to go by train but now we drive and park nearby. Maybe stay and shop too?

I use a walker in the house and wheelchair when we go out. Falling is a problem so use it loosely but better if loose it. I started with a long walking pole then 2 and now a walker.Upright posture essential : )

Thank you so much for your response Litty. I know I have hereditary cerebella ataxia (my poor identical twin sister has got it too!). I haven't seen anyone for quite some time so I'm almost certain I'll go there to see if I can learn anything that will help me - I've had it for two years and although my sister's struggles with her speech I'm affected more with worsening mobility. Stairs will soon be a problem. I live near to Peterborough and it just takes 50 mins on the train to London. I know you can't put a price on health but I'm guessing it's like a private centre?

A bit late in the day but just to echo everyones comments, Dr Giunti at Queens Square is excellent. Appointments are not rushed and you have as much time as you need to ask questions and discuss things. I'm a little nearer London than you (near Stevenage) but I always use the train. I go with my wife and we make a day of it so the appointment is not the focal point of the visit.