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
Donna, my lovely...... I agree with you, if you wont benefit from the appointmen, dont go..... cry off sick🙂
Thank you for answering. You said exactly what I was thinking. Bless you. Take care ,Donna
Great minds think alike Donna, not that I’m boasting, you understand!
I see you are privaliged to have an extention of my name......lol 🙂
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.
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.
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.
Nigel
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.
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.
Thank you turner47.What is a cons video?
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.
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!
Hi struggling so bad atm i've got pd symptoms been waiting on a neurogolist for 7 months i was giving anti depressant for my mood but they brought on my tremors more several headaches to so couldnt take them now pain killers r doing the same i feel like i cant cope anymore cant take anything without it effecting me really crying out for help finding life is not worth living in so much pain all time & can relieve it in anyway
Hi Di01
You’re obviously going through a real bad time and I feel your pain but life is always worth living. I think the worse you get your anxiety, depression gets worse which in turn makes your illness worse so it becomes a vicious circle.
Medical science does not know enough about the brain and can only treat systems never a cure.
It’s really difficult to advise you so I can only say life will get better (trust me I’m not a doctor)
You always have the good people of Healthunlocked to offer help and support and if I can help you I most certainly will.
You take care and keep in touch my friend.
Who Cares Wins.
Thanks paul so bad atm just want some1 to listen how bad i am feels like everyone is leaving me die 😭
Hello my friend
Maybe you need to chat to someone in the family a good friend or your partner if you have one, also there’s professional organisations such as the Samaritans or even Ataxia UK.
Have you seen Neurologist yet?
These things are never quick to diagnose my systems started in early 2017 but not until late 2019 that it was diagnosed. It’s of course important for doctors to get the diagnosis right so you get the right treatment.
You need to be careful you’re not making your systems worse by getting yourself too worked up, it’s so easy to do.
People with brain problems do sometimes feel neglected and alone and that nobody can help but help is always out there in one way or another.
We also need to help ourselves as well as doctors can only do so much and sometimes self-help is the best treatment we can get.
You take care and be strong we are all stronger than we think.
Who Cares Wins.
Sorry for late reply paul yh i seen a private neurologist he was useless tho i came out even more frustrated than i went in now i'm back to square one only so much now i can take feel do drained & weak & now started feeling its effecting my heart as been getting so middle chest pains or diaphragm ones just keep thinking when will i get some kind of answers been bed bound & suffering probably have heart attack b4 i find out whats going on!
Sorry you’re having such a difficult time. I understand how frustrated you are after not getting help from the neurologist. When I saw a neurologist years ago, he saw I couldn’t do tandem gait and would sway with my legs together. He also saw my tongue spasm and other things, but he didn’t care.
Can you contact your doctor to get a referral to a different specialist? Hang in there and hope things improve for you!
Hi klutzy ur experience was very much like mine went in showed him my tremors which i video recorded when they come on & had a list of my symptoms he had one glance at it told me to get up on his bed he then did a physical hammer on knee & elbow reflex test & looked at me and said are you stressed i went what stressed for 7 months well then the pressure got to me & i started crying not the answer i was looking for after all paying out £250 for that one comment 🤨😭
I think now I remember your earlier comments on another thread. Yes we both are in same purgatory of stuck in limbo, which is awful. Sorry you were dismissed by neuro. Hope you find a new neurologist to help you.
Yh probably i'm just tryna find my own answers which basically all my symptoms relate to many diseases sucks not knowing whats really happening & not avin a diagnosis getting me so down feels like my full body is literally dying off..h8t it dont know where to turn when u have to wait taking it tole now cried like 30 times a days just cant switch off the feeling of sadness why i think all this has effected my hormone system really horrible living in hell takes me all day just to think tomorrow is anuva day then get up wonder why im still here suffering sounds bad that doesnt it! 
Hi Di. 3 things that will make your tremors worse
1. Illness
Stress
Tiredness.
I hope you’ve managed to see someone since you wrote thing & things have changed for you, but if not are you taking anything for your tremors? If not ask about being started on clonazepam for them. I & a lot of other ataxia suffer take this, so it maybe worth speaking to one of your medical professionals? A side affect of the majority of anti depressants are tremors(amongst other things) but if you can’t persist in taking them then any side affects will be gone within 2 week, once the medication is in your system. It sounds like you could really do with trying to persist with them tho & hopefully your mood. Wishing you all the very best😊
Hi legs alive i'm literally getting loads of sleep because always fatigued thru day getting up 4 times during night never feel the benefit of sleeping anyway with loads of little another issues has arised is i'm chucking up on anti depressants feel like i can win atm getting frustrated to wanting smash things up thats how bad my mood is & my health puts the pressure on it because i h8t being bed bound & my legs letting me down & body weakness got up again like why im i still here suffering this now is at that point feel like what more can i do waiting on people to give me answers while i aint got that hope there doesnt help not aving the happy hormone in me but thanks for replying
Finally saw the Neurologist
Appointment at John Radcliffe Hospital
Friedreich's Ataxia Diagnosis - questions to ask the neurologist?
