Sheffield hospital

[Ilide]

Hi everyone,

My daughter has an appointment at the Ataxia hospital in Sheffield next month. They’ve told us that the appointment will last about 40minutes. Can anyone tell me what will happen when we get there?

[Wobblybob]

Hi, is it the adults or children’s clinic at Sheffield that you are going to?x

[Ilide in reply to Wobblybob]

Adults

[TedTom]

Hopefully this will be to see Prof. Hadjivassiliou and nurse. He is very nice, easy to talk with etc. Hopefully the nurse team there will also be able to discuss and help arrange local support such as specialist physio etc for you. Main benefit friend with Ataxia found was that at last someone understood something of what was happening to her. Maybe some “tests” such as touching nose,checking eye movement etc and arranging for mri scan. Take any questions you have with you to ask, I always had to have these written down with me as in the moment it’s easy to forget when you’re anxious and trying to understand everything. There’s no getting away from the fact that there’s currently no cure etc and it seems to be different for every different person who has it but remember you are never alone even though it often feels that way. Keep fighting back in every way you can . All the best x

[Ilide in reply to TedTom]

Thank you so much for your help and kind words xx

[matthew2909]

Hey how are you I’m new on here I’m 21 and I’ve got ataxia

[Razzy in reply to matthew2909]

Hi Mathew welcome to the forum , don't be afraid to ask questions they are a friendly bunch of folks in here and very helpful

[Razzy]

A series of test will be done , bloods may be taken, if she has not had an MRI an appointment will be made for you , it will vary on the type of Ataxia she has as to what other tests will be done. Questions may be asked regarding what symptoms she has and how they affect her at this time. do not be afraid to ask any questions you may have , and remember you will be talking to one of the TOP ataxia specialists, and the only silly questions are the ones you do not ask for fear of appearing silly. They are there to help and reassure you , and they really do a fantastic job in doing so . Good Luck

[Ilide in reply to Razzy]

Thank you so much for that xx

[lynnm]

Hi .You are going to the best place and the best hands , the care there and their commitment is amazing , I Have been under them for 5 years and with their help its made knowing that we are not alone , they understand and they listen , and no question when asked seems silly,I do write them down before I go. I go back to see the prof in Oct myself

I wish you and you daughter all the best .

[Ilide in reply to lynnm]

Thanks, Lynnm. We are both looking forward to it now. Good idea about writing questions down before we go!

[SamGH]

Word of warning my first appointment in the London Clinic I was told last an hour I was there all day just be prepared

[Ilide in reply to SamGH]

Thanks for the word of warning. They’ve told me it’s going to be 40 minutes and I’ve booked the train in the afternoon. Fingers crossed!

[rankin1st]

We found they were very considerate that we travelled a long way so if you explain about the train I am sure they will try and help make sure that happens. We went back up again after initial appointment for the additional tests all the best

[Ilide]

Thank you 👍

[Colredrovers]

Hi have you been yet? How did you get on? xXx

[Ilide in reply to Colredrovers]

Hi. Yes we’ve been. It was fantastic. Paula, my daughter who has Ataxia felt as if there was light at the end of the tunnel. Dr. Shan was so lovely and asked Paula about her medical history as well as examining her. She had quite a few blood tests and is going back for further tests as a day patient. We also spoke to an Ataxia nurse who was so understanding and supportive. It was definitely worth going!

[Colredrovers]

That's great, I was diagnosed in May and have had a big improvement since then and like you said can now see the light at the end of the tunnel.