Progress ay last.

[jomo50]

Went to visit Professor Chinnery at the Newcastle ataxia research centre yesterday, he was a very nice man and has now taken me on as one of his patients. He answered all my questions and said he would keep me up to date with any research progress. One of my questions was about Diamox, which some of you said had helped. He did say this was best for those suffering from episodic ataxia. Hope that helps some of you.

At least there is research being carried on and although answers may not be immediate they could be on their way.

jomo50

[Tiggywinkles]

Well done! Glad it went so well for you.

I am off to see Dr. Tofaris at The John Radcliffe next Friday, so hope my appointment is as successful as yours. I have Friedreich's Ataxia, but it didn't start until just a few years ago, so very late on-set! (I am 49) I am hoping he may be able to provide me with some answers as to why now?

Heather

[Hidden]

I have to say that I have always found Professor Chinnery a true Gentleman.

[wobblybee]

Hi Jomo!

I was there all Friday afternoon, we could have chatted! Prof Chinnery is a lovely man. xB

[Hidden in reply to wobblybee]

I have to admit I was expecting tosee a much ollder gentlemen - I think it was the word Prrofessor that made me think so - he looked so young.

Well, time for my torture

[tedjohnson]

Keep smiling. There are so many more people in the world who are far worse off than us

I am sure the professionals we see would love to have good news and all the answers but we must just wait

[wobblybee]

Every professional is starting to look younger to me! I can remember my grandmother

saying 'policemen are starting to look younger' and I used to think 'what is she on about'?

I think he'd be very flattered John! x B

[february]

Dear Jomo, Glad your getting help and that you're appt. with your new neuro was successful! It makes all the difference to have a neuro you like, and can talk frankly with. I live in the States and see a neuro at the University of Michigan Hospital (my second. as my first one retired). Thankfully, I've liked them both! My best to you, I don't have EA, but sincerely hope the Diamox works for you! I've heard it can help EA..., ;o)

[jomo50 in reply to february]

Hi February,

I have been very lucky I have always had a good neurologist, but Professor Chinnery is leading research on ataxia here in the UK. I have a friend who is a Professor of neuro radiology and said that Prof Chinnery puts them to shame as he seems to have an incredible brain. I can only think how fortunate I am. Actually I don't suffer from EA and only mentioned Diamox for those who might suffer from it.

Lovely to hear from you.

jomo50

[february]

HI Again Jomo, So sorry, I thought you had EA! Kind of you to mention Diamox for those that do! I have Sporadic Cerebellar Ataxia (non-hereditary-we think?/unknown cause). I was diagnosed 10 years ago, but think I started having small symptoms about 8 years before that. No one in my family, as far back as we know has/had ataxia, except me. I like to say I'm special...,ha!

Anyway, I'm thrilled for you that you've found such a great neurologist! My best to you..., ;o)

[jomo50]

Hi February,

Thanks for the blog. My symptoms sound almost the same as your, although mine only started 7 years ago.

I've never thought of myself as special, but will from now on, Thanks for that

From the special one

jomo50

[berejena]

I am waiting to hear from Newcastle |Ataxia Centre

Keep well

[jomo50 in reply to berejena]

Hi berejena,

I hope you were as satisfied as I was. Now there is someone with funding and knowledge of ataxia who can help us.

Look on the bright side

jomo50

[byer1moor in reply to jomo50]

Hi I seen pro chinnery 8 year ago he told me there are only 16 family's with the same ataxia As I have and that they are prob related. What kind do you have

[jomo50 in reply to byer1moor]

Don't Know what kind of Cerrebeller Ataxia I have, but it seems to have been caused by an unknown virus. Started 7 tears ago and was initially was very progressive, but seems to have been stabilized by medication.

jomo50