I have got an appointment with Dr Ming at Hull Royal Infirmary in 3 weeks.

[babygirl123]

This will be the second time that I will have seen him. I am going to ask about seeing a specialist nurse,

I didn't get told about being able to see anyone other than the physiotherapist.

[SueMillman Partner Ataxia UK]

Hi babygirl123

I don't think they have a Specialist Ataxia Nurse at Hull - though they may have a Specialist Neurological Nurse. If you would like to see a Specialist Ataxia Nurse you will need to ask for a referral to the Sheffield Ataxia Centre at the Royal Hallamshire, where Prof Hadjivassiliou is the neurologist and Diane Friend is the Specialist Nurse.

Sue

[babygirl123 in reply to SueMillman]

Hi Sue

I didn't know that Hull didn't have one, may be that's why he didn't mention it.

My physio nurse is good, she has told me more than the consultant did. Will see what happens when I go.

Marion x

[SueMillman Partner Ataxia UK in reply to babygirl123]

Hi Marion

It's good that you're happy with your physio. I hope your appointment goes well.

Sue

[babygirl123 in reply to SueMillman]

Thanks Sue, I hope so too

Since I saw him last year I don't think things have got worse, apart from being tired more especially when walking about for too long or too far. Which I don't like because I am always going to and from my mums, the local shops and home. It take me a lot longer to do now, but I will carry on doing it because I still can.

[february]

Good luck with your appointment, Babygirl123! Glad your physio is going well! I live in the States, and we call it physical therapy here. I just finished aquatic (pool) therapy and LOVED it. I plan to keep doing it on my own! ;o)

[babygirl123]

Hi February

Im not seeing physio nurse again till November, I can ring her if I need to go before that.

I go swimming a lot but I won't be going for a few weeks with the kids being of school. My local pool will be over run with kids. So I will start again in September.

Im sure my appointment will be ok. Thanks

Marion

[jonbon]

Hi babygirl 123, Dr Ming was the consultant who diagnosed me in 2012. I have found him to be quite blase about the condition as if its nothing new and I should just get on with it! He's not willing to send patients for in depth treatment just soothing stuff. I have had several appointments at the clinic and always see the registrar. I saw my GP and was referred to Sheffield and they have been wonderful, I can't praise them enough. It's as though Hull just put a plaster on me but Sheffield take it off and have a proper look at the problem. There isn't a specialist nurse in Hull but there is a fantastic Neurophysio called Sue Wood, ask to see her she is brilliant.

I hope you get on ok. Let us know.

Nicky x

[babygirl123 in reply to jonbon]

Hi Nicky,

I found Dr Ming unhelpful like you. I do see Sue Wood, she is such a lovely woman. She really does care, takes her time with you and explains every thing. Do you like in Hull or any where near?

[babygirl123 in reply to babygirl123]

Oh dear, I have made a mistake, I meant to ask if you live in Hull not like.

What am I like. Marion xx

[jonbon in reply to babygirl123]

Hi Marion I live in Brough not too far away. I have been going on this site for ages and never come across anybody local. I go to a support group in York but am finding that fatigue is stopping me doing a lot. Have you suffered with ataxia for long? Nicky x

[babygirl123 in reply to jonbon]

Hi Nicky

I have been diagnosed with Ataxia (unknown cause) for almost a year. I was seen by Dr Ming 4 months after first going to my GP. I joined Ataxia UK in May. I have also been in touch with the support group in York and I am going to the next meeting in August.

Will you be going? Or is it to early to say just yet?

Marion x

[twinkle2508]

Hi babygirl123,

I've been to see Professor Hadjivassailiou at Sheffield and at Chesterfield for approx. 3 yrs, He's kind and willing to talk to his patients ( nice gentle manner ), nothing every seems to much trouble for him.......

only saw him on the 4th August, walked in with a splint on my wrist....his first words were " carpel tunnel, we can get you a operation for that!!!!!! " I must admit, I was taken aback by how quick he seems, to get things sorted for me.........if I were you, i'd recommend Professor H, I've never looked back since I've met him.

good luck with the future and keep smiling

helen

[babygirl123 in reply to twinkle2508]

Hi Helen

Who did you see and where did you go before you went to see Prof H?

I go in the morning 2 see DR Ming. I hope that Im not waiting 4 ages, I was waiting 2 and half hours the first appointment I had with him. The second time I saw him was when I was diagnosed, I only had 2 wait an hour. (so fingers crossed) this time I hope his clinic is on time.

Marion x

[twinkle2508 in reply to babygirl123]

hi marion,

well, it was my neurologist who told me I had cerebellar ataxia and basically gave me no information on the illness, leaving me feeling quite alone and unsure as to what road to go down, so I did some research via the internet, found my local ataxia group, got told about Professor ( marios ), asked how I go about getting a appointment to see him, was told to ask via my GP.......now I don't feel so alone and I know that there is someone out there, who can answer my questions and treats my with respect. My first appointment with Professor H was approx. 2 hours, but since then its become as long as I needed.....

I hope your appointment with Dr Mingus doesn't take too long today, from what I've read, he does seem abit abrupt aswell as not having a good understanding of ataxia.....Professor H is a honorary reader in ataxia and if you want you might like to take a look at the Royal Hallamshire website to find out more about him

good luck

Helen

[babygirl123 in reply to twinkle2508]

Hi Helen

I was only waiting an hour today which I didn't think was too bad.

I didn't see DR Ming either I saw his registrar, she just asked how I was doing if I saw physio nurse regular and have I been assessed by social services.

Then she said we will see you again in a year.

I am going to look on Hallamshires website.

Thanks for your reply

Marion

[twinkle2508 in reply to babygirl123]

Hi Marion.

all sounds good.......hope you find it of interest, exploring the hallamshire website....it really helped me decide

good luck

helen