For years I have been going to the Ataxia Centre in London to see DR.Giunti once a year.
There is no cure for my condition so it is just to monitor this. But I live in Wales and driving there and back takes always more than 10 hours. Recently I found out that the Cardiff hospital has an Ataxia Neurologist. Should I ask to see him once a year instead?
Dear Klazien
Yes. I would explain your difficulties to Dr Giunti and ask her if she will refer to you to Dr Mark Wardle in Cardiff.
Harriet
Hi,
Do you have a clear diagnosis of which ataxia is affecting you?
I have read your previous posts and it sounds extremely similar to my son’s condition and his late grandfather’s.
Did they find anything specific when you did the 1000 genome testing?
My ataxia is supposed to be ‘late onset idiopatic cerebellar ataxia’ but this name was given for want of anything else. Nothing shows on the MRI and I had that genome test more than a year ago and haven’t heard anything yet
Hi Klazien,
I can assure you ICA is 'real' it is not a convenient catchall or side step.
If you are not going to see your consultant for a long time write to the consultant with your request detailing the reasons. Apart from the distance issue it will not do any harm to have another view on your condition.
My understanding is that the symptoms of ICA are fourfold.
1 Speech, 2 Swallow, 3. Balance, 4 Fatigue, anything else needs investigating in its own right.
I am a carer for my wife who was diagnosed in 2008 and her condition is now quite advanced. if I can be of help feel free to contact me.
Digger7
Lol - I understand fully — I do not drive anymore so rely on my husband. I have been going to London Ataxia Centre for probably 10 years (journey always hard). We live close to the Herefordshire border. You know each year you detiorate.
Harriet’s advice sounds spot on.
Good luck x
This long journey is also getting harder on my husband, I don’t drive anymore and he is getting too old.
I deteriorated from 2 crutches to a rollator and a wheelchair. We have to stop at the services toilets on the way to London but the rollator doesn’t fit in the car and the handicap toilet there is always locked. So I have to leave the wheelchair outside one of the cubicles and hold the walls. Luckily I can still do that.
I also live in Wales and, although I myself don't see Dr Wardle, he has an excellent reputation with the SCAs.
Yes, you she see the Neurologist who is closer to home. I live in Las Vegas, Nevada USA. I used to travel to UCLA, which took 4 hrs. We had to stay over in L.A.
Now I travel local 30 minuets as the Cleveland Clinic Lou Ruvo Center opened her in Vegas. They have Ataxia Specialist, PT and speech.
I am so happy 😀.
Hi, you can buy a Radar key for the disabled toilets. I bought mine online from Amazon for £2.99. It opens all the disabled toilets.
I ordered a Radar key after hearing about this from you and used it for the first time yesterday. It worked in the services along the M4 and makes live so much easier. Thank you for your advice.
Brilliant news & they’re worth there weight in gold when you need to use them at services ect, glad I could be of some help, it’s always worth knowing about the inexpensive things we can buy that help tremendously xxx
MAYBE YOU CAN SEE both initially and then decide., (ignore caps ) Giunti because you know her and the other dr because he is your future Whatever happens good luck xo N
Hi Klazien, I would wholeheartedly recommend Dr Mark Wardle, I have episodic ataxia and he has always been great with me. I spent a week as an inpatient in both London and Cardiff and would recommend Cardiff all day long. Good luck.
Hi,
I've been seeing Dr Wardle twice a year for a couple of years and he's been great. Had my initial diagnosis elsewhere and Dr Wardle is so much better. I live in Newport and just asked my gp to refer me to him instead of the local one.
Neurologist/consultant at John Radcliffe
Cerebellar Atrophy and Gluten Ataxia.
Referred by GP but still waiting
Can ataxia improve to hardly any symptoms?
Cerebellar Ataxia and Dirrhea 
