RE: Sheffield Ataxia centre

[babygirl123]

HAS ANYONE WITH CEREBELLAR ATAXIA (UNKNOWN CAUSE) , EVER BEEN GIVEN A REASON FOR THEIR ATAXIA BY DR H? OR HAVE DID YOU JUST GET TOLD IT IS STILL UNKNOWN? I HAVE GOT MY FIRST APPOINTMENT WITH HIM ON 1ST OF JULY.

[HarryB Administrator]

Hi babygirl123

There are now over 60 genes known to cause ataxia...and counting... but still 40% of people with ataxia do not know their underlying cause. I am one of those 40%, even after 25 years. Please rest assured, if the underlying cause for your ataxia can be identified, Prof Hadjivassilou is the man to find it! He has identified the underlying causes of ataxia in many people. He may not be able to identify the cause right now but research into improving diagnosis is very much ongoing and he will hopefully be able to do so in the future.

I hope your appointment on 1st July goes well.

Best wishes

Harriet

[babygirl123 in reply to HarryB]

Thanks Harriet,

I've heard he is good and is working to identify more causes. I think everyone wants to know the cause even if we don't get answers straight away. I might get more answers and explanations than I have from the consultant I'm seeing here in Hull.

Marion x

[LBenyon]

I was told by my nueroglist that drinking alot of acholol when I was younger could of been the cause,i am now 61

[february]

Dear Babygirl, I was diagnosed eleven years ago with Sporadic Cerebellar Ataxia (unknown cause/symptoms 24/7). I live in the US, in the State of Michigan. I and my neurologist have no idea why I have ataxia, as I was always healthy, active and athletic before this. Also, in my case, there is no family history (that we know of at this point). Years ago I had genetic testing for the known recessive types of ataxia, which was negative. I may have genetic "genome" testing for the known dominent types of ataxia, as I have two grown children and three young grandchildren, and I'd like to know (for my peace of mind) if there's any hereditary component. Anyway, I've heard Dr. H in the UK is excellent!!! My best to you for your upcoming appointment..., ;o)

[babygirl123]

DR H is highly recommended by people who have been seen by him, no one has had any thing negative about him and they all say he is very good. so fingers crossed

[Lucycord123]

Hey, I'm Lucy. I have SCA2...hereditary. how did your appointment go? How are you coping with your diagnosis?