Neurologist appointment : Neurologist appointment... - Ataxia UK

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Neurologist appointment


Neurologist appointment

I have an appointment with my neurologist at the end of January. It will take approximately 40mins. to get there,a30min wait to see a nurse who will take my blood pressure and a note of my weight. I will wait another 30 mins. or an hour to see the neurologist who will chat for 5 mins._ end of appointment Is it worth it? Sorry for the moan but I can’t see the point. Donna

20 Replies

Donna, my lovely...... I agree with you, if you wont benefit from the appointmen, dont go..... cry off sick🙂

Don21 in reply to Veteran250

Thank you for answering. You said exactly what I was thinking. Bless you. Take care ,Donna

Veteran250 in reply to Don21

Great minds think alike Donna, not that I’m boasting, you understand!

I see you are privaliged to have an extention of my 🙂

Ask for a telephone consultation. Sheffield has been doing this and for me, it works very well indeed. I will have to go in again but the chats are really fruitful, medication changed etc.

Don21 in reply to pinjem

That’s a really good idea Pinjem but my speech is so bad I dread making phone calls plus I get so nervous that it is even worse.

nigelrheath in reply to Don21

Hi Don,My speech was deteriorating so I investigated speech therapy. I managed to get in with a private company who support the nhs in my area, though the Southampton speech therapy department was really helpful.

I only needed 4 sessions and found the whole thing most beneficial.

I have been instructed to tell more jokes! Something I used to do all the time. Some are short and some take 7 or more minutes. My wife is my main audience but I’m not beyond phoning friends and family to practice on them.

I find putting the phone on loudspeaker helps me as I need both hands free to properly tell stories!

My jokes usually require an accent from welsh to Italian via Irish, including American and West Country. This is really good for focusing on speaking. I have two hand puppets, one is Welsh and the other is Australian. Easy to make a puppet out of a sock, and practice in front of the mirror.


P.S. forgot to mention my speech therapy was all on video calls so we could see each other. N

🤔My appointments have been in London, but I live in Newcastle, so recent appointments have been by telephone. My speech can be variable, and processing information can be variable, so I find face to face more appropriate. Face to face I could easily judge when it was appropriate to answer/ask a question. But on the telephone I couldn’t stop myself from butting in to what the Neurologist was saying...🥴 I was worried I’d lose my train of thought.

Don21 in reply to wobblybee

Plus in a face to face you can tell if they understand you!

Ask for a video call and request communication support, they have a duty of care and your speech&language therapist should discuss all support you require with them prior to the appointment.I urge you to keep your appointment!

If you have a disability (speech impairment, processing delay, anything at all) they must accommodate your needs!

Plus it a good way to be heard, accounted and considered, but it will also increase their understanding of your needs and pave the way for the future patients they will inevitably be seeing.

If it benefits you as in you want to discuss possible symptoms changes u have experienced etc, if not opt for a telephone appointment

I would still go even if it was for 5 mins, if a phone call is no use. It might be worth it in the end. I travel to Sheffield to see my consultant, which takes three hours from home. It is the best place I have been to so far for results. Good luck on what ever you decide, take care.Suzie

My cons video calls me while this pandemic is on.

Don21 in reply to turner47

Thank you turner47.What is a cons video?

turner47 in reply to Don21

Sorry consultant video call. I am in Nottingham and my clinic is at Royal Hallamshire hosp Sheffield. Xx

Don21 in reply to turner47

Sorry, I’ve just worked it out! (Brain cells vert slow)

Hi Donna - I was introduced to Sheffield by my GP with an 80 mile round trip until my Ataxia worsened. The consultation lasted about 20 mins each time but now I have telephone consultations which are invaluable. So the initial visit to me was well worth it. Good luck Donna x

Research questions you may have and come prepared to understand how his answers apply to you. Ask while you can because no one else can answer them. There are so many types of ataxia and I'm finding my neuro doesn't really care what caused it or what type, knowing it's not a genetic cause. There are types that can be treated. I have so many questions but he isn't available for them. Appointments in Canada can be almost a year wait. He might talk longer if you give him something to discuss.

Don21 in reply to rideabike

Thanks for the response. I have a telephone appointment tomorrow. I have written a list of things that I want to discuss. My writing is so bad that I can’t read it!

Hello Don21

L had a phone appointment with my Neurologist who listened to my notes and made recommendations for treatment, confirmed by a letter, copied to my Doctor, then covid happened. The treatment suggested was not initiated! Nobody is at fault!

Don21 in reply to stedman

Thanks stedman,I have a telephone appointment tomorrow

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