Appointment at John Radcliffe Hospital

After a long wait (6 months) I finally had my appointment at JRH with Dr. Tofaris on Friday. It was definitely worth both the wait and the journey (I live in North Devon) to finally speak with someone who knew what I was talking about. They may not be able to offer any imediate treatment but it does make such a change not have a blank look from the person seeing you because they have no previous experience of someone like you! Now I have made the contact there I hope that if any trials or possible treatments are around I will hear about them.

21 Replies

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  • Hi Tiggywinkles!

    It's a good feeling to know you're believed, like a weight being lifted.

    That alone helps you feel positive.

    As you say, a blank look is what you usually get! xB

  • Morning,

    I haven't had any problems with being believed that I have something wrong, just not knowing what to do or having much knowledge of Ataxia.

    Heather

  • Morning Heather! It gets to the point where you feel as though you know the condition almost as well as the experts! How's it going with you today? I've just done something really stupid. I went out to feed the birds and then decided to clear some decaying ferns. Well I didn't have any gloves on did I, or glasses come to that! I must have grabbed hold of a thistle/thorn as well, because the next thing I noticed was blood dripping down my hand, it kept on coming! I've managed to lacerate several fingers but exerting plenty pressure has stopped the flow. I hope your day is going better! xBeryl

  • Oh Dear - hope it isn't too bad. My day is one of catching up on stuff which has come whilst I was away. I have a self-catering cottage business so always paperwork to do. No plans to go out today, it is wet, windy and I am still feeling tired from my travels. (Also cottage changeovers yesterday!) Bills to be paid, post to clear - one long round of fun!!

    Heather

  • I remember the feelings I had when I discovered somebody knew what I was talking about and meeting other people with the same problems. The relief is emended.

    Life will be better for you now.

  • It is nice to speak with people who knew about Ataxia and it wasn't down to me to explain everything. I hope it will be the start of a good relationship with Oxford!

    Heather

  • Glad you got some joy from your visit to Oxford.I am seeing the same consultant in Jan and am now feeling more optimistic.Don't want to be met with blank stares or feel a freak.It is nice to be believed.

  • Dr. Tofaris was very nice. As you know, I have had lots of other things to cope with over the last year or so, so this was something positive for a change. Do hope things are better for you now,

    Heather

  • Hi everyone I'm waiting for an appointment at Newcastle Ataxia Centre, Have a Brother-in-Law living nearby so I can stay there

    Berejena

  • Afternoon,

    Hope you don't have to wait too long. How long ago were you referred there? I don't know about wating times for Newcastle but Oxford is quite a wait.

    Heather

  • Hi Heather! Could you tell me please if Dr Tofaris is seeing you again soon? - and whether he prescribed any medication or physio etc.... It's just that I wonder which of the new drugs are being prescribed / used these days.

  • My next appointment is in 12 months time and no new medication has been prescribed. (I take amitriptyline for pain relief already) I did ask about exercise/physio and nothing in particular reccomended. I am still fairly mobile on my own, so probably not of much benefit yet. I shall ask about anything local to me next time I see my GP. Being in Devon means anything they could offer me in Oxford would not be feasible because of the distance involved.

    Heather

  • hi im glad u felt the centre was usefull, i found it very good [ i recommended it in the ataxian] although medication wise they dont have anything available immediately they note down whether youd be willing to do a trial so you'll be offered them when they become available. i have been refered to a disability movement consultant [not sure of his correct title] but he wants me to do an inpatients stay for 2 weeks so i can be assesed by their multidisciplinary team - who specialise in ataxia and discuss ways to help me

  • Yes, it was worth making the journey, if only to become a patient of someone who understands the problems I have. I do hope that if any suitable trials come up I will be asked if I want to take part. When I was there I also saw Dr. Nemeth who is doing a study entitled 'Measuring Movement Difficulties in Clinical Conditions' - I wondered if this was who you were seeing too? I also see you have FA and wondered how old you were when it was diagnosed - I know you say on your profile 13 years ago but then I have got to guess how old you are! I know I am pretty old for this to have started being 49 now and the first symptoms started to become noticeable about 6 or 7 years ago. Look forward to hearing more from you.

    Heather

  • hi yes ive got FA im 27 i was diagnosed at 13 (thanks to a scoliosis op). yea ive worked with dr nemeth shes nice,i did a blood trial thing for her for testing relatives and comparing blood of fa patients with relative blood. she refered me to dr henderson-slater who is the movement disability consultant so they all know each other. hdr hederson-slater doesnt specialise in ataxia hes more looking at movement in people with neurologicl illnesses. he wants me to stay in the oce which is oxford centre of enablement

  • Thanks for your reply and info about yourself - I now know it wasn't Dr. Nemeth I saw as it was a man!! I should have paid more attention to names, but he was very pleasant and was obviously involved in the study. I know I met Ruth Valentine, she sat in with us. It all sounds very interesting about you staying at the O.C.E. - when are you going to do it? (assuming you are) and will you take your dog with you?

  • yea ruth is luvely we've been in contact alot, sadly shes left noew but she assurd me there would be another ataxia nurse to take over.yea dr.nemeth is a lady, well she was last time i went lol. im waiting for funding from hampshire to go to oce but im half way there, its a 2 week stay so they can assess me on a day to day basis - good and bad, and show me how to do thingss better or equipment to help.their allowing my dog for like a day to assess me with him but cos its a ward he cant stay. he goes to hospital with mme normally but only outpatients not on wards

  • I'm happy for you Tiggywinkles! I live in the States and see a neurologist at a big university hospital. When I was diagnosed (10 years ago), through a process of elimination, I had NEVER heard of ataxia before! You sound as though you have a very positive attitude! That's half the battle! Keep as active physically as you can (safely), and exercise for strength and balance. Eat as healthy as possible. Take care of you! ;o)

  • Hi Tiggywinkles, so pleased toy had a good appointment at JRH, I go to the ataxia clinic at NHNN and I must agree with you that it's good not to get blank looks

    I also live in North Devon I don't think there are many of us in this part,of the country! It would be good to meet so if you would like to can you e-mail me at smritchie18@talktalk.net hope to hear from you

    Marygate

  • Hi just geting to grips with this contraption . 63year old went to tesco for shirt came home with tablet no idea wot im doing .got head like a toy shop.be good to hear from some Pinball Pete

  • Morning to you!

    Hope that you are getting to grips with the tablet now! You have said previously that you are new to this site but I guess not newly diagnosed with ataxia - which type do you have? You can put a short profile of yourself on here if you want. It gives people writing to you directly some idea of what your problems are, etc.

    It is nice to hear from someone with similar issues - otherwise you can think you are the only one.

    Keep going with the computer/tablet.

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