What to expect from your GP or Neurologist

Hello everyone,

This is my first post. I was diagnosed with Late Onset Cerebellar Ataxia in Feb 21 by a Neurologist in a short appointment after waiting a year for one. I was referred for blood tests and an MRI. My next appointment is in August by phone.

All of this is new to me and completely shocking. I do not know what I can ask of the Neorologist, my doctor defers to the Neurologist.

So I have asked my GP for a referral to a SALT and Physio they do not seem to be working.

What can we expect from medical professionals?
Do the Specialist Centres do more?

I have made a claim for PIP and gone on the sick.

If anyone has any thoughts they would be more than welcome, thanks.

kate

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I was given a differential diagnosis of Ataxia by an alert GP who happened by chance to notice my gait when I was walking through a clinic. I was referred to a neurologist by my GP however I forget the lag time from referral to appointment.

I too was diagnosed with Late Onset Cerebellar Ataxia (I was 70 at the time 76 now) during a thorough examination that included the standard neurological tests (reflexes, eye movement, hand to eye co-ordination etc. and a number of questions; frequent urination etc.) all of which were used to confirm the diagnosis. He spent an hour or more doing all of this.

I saw him yearly for a few years after that and was sent for a blood test to see if a genetic cause could be found. Unfortunately they tested for Friederich’s only which was negative so my cause remains unknown although I had had hints of balance problems all of my life which did not interfere with my daily life or with competitive sports activity. He offered to send me for a special MRI which I declined as he said no matter what type of Ataxia I had there was no treatment.

Fortunately my progression since diagnosis has been very slow although I just had to give up golf because I can no longer take a full hard swing at a golf ball without falling over. I do continue to walk trails with a purpose built walker (Trionic) and lift weights every second day at the “Y”.

I did see a rehab physician specializing in neurological problems but my function was sufficiently high that she could not help me particularly in view of my exercise routine which is usually the first function of rehab. She sees 20 or so Ataxia patients in her practice and only a few have been diagnosed with the actual variant that they have.

Unfortunately my neurologist left private practice although he said he would continue to follow me I haven’t seen him in a couple of years what with COVID and all delaying things. He has nothing to offer however so I haven’t pressed the matter. The last time I saw him his parting words were: "It’s not going to kill you, it’s not going to shorten your life span but it will progress gradually over time.

That’s my experience which sounds like it may be close to yours. I think that regular exercise has helped slow progression as has a sensible diet.

I hope that my experience and observations will better help you understand what we are both dealing with.

Best Wishes

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Hi Kate
I’m sorry to hear of your diagnoses, I’m 52 and was diagnosed back in 2007. I receive a Pip payment and also have just started receiving employment support allowance.
I go annually to see my neurologist in London. Unfortunately as you know there isn’t anything they can do except monitor and advise.
Have had several sessions of physio and I used to do Pilates but because the progression was relatively slow, I did manage to work full time up-to a year ago.
Just claim what you can to help and try to keep your chin up. The diagnose s is’nt the end, I had 10+years before it started getting much worse.
So hopefully your progression is slow which let’s you become accustomed to it and make allowances or adjustments over the years.
Best Wishes
Martin

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Hello,I just thought I would share my story with you. As you can see from the stories you have received that we are all different in our severity and rates of progression I too say a neurologist fora few years but he was only able to monitor my progression he did refer me to a speech therapist who was a big help in teaching how to chew and swallow as well as how to save my voice. I was diagnosed about 15 years ago, (sca8 by blood test.) and I have been fortunate in the fact that my progression has been slow although there has been many challenges

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Hi Kate, welcome🙂
We’re advised not to accept that every troubling symptom should be put down to ataxia, so don’t be fobbed off.
From personal experience I can say that I’ve had more support available from an Accredited Ataxia Centre. An Ataxia Nurse, and NeuroPhysio have had telephone appointments with me several times.
I live in Newcastle, our local Ataxia Centre closed, but prior to that my Neurologist had sent bloods off to London (UCLH Queen Square) and they offered an appointment.
There’s also a Specialist Ataxia Centre at Sheffield, this might be convenient for you, your GP could make a referral.

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Hi, I live in the East Midlands, I have asked my GP to refer me to the London Specialist Centre it’s nearer and easier to get to.

It’s a good point regarding every symptom being put down to Ataxia.

It’s been great to read such positive posts, prior to this I was searching the internet and getting more depressed by the minute.

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Kate if I were you I would aggressively pursue physical and occupational therapy. Try to find therapists who are outside of the box thinkers. You are at an age where some will want to shrug their shoulders and say TOO OLD…by the time the symptoms progress she will not be active enough for it to matter…however, you are now young enough to possibly slow your progression and learn new ways to do things, which will make your life easier and more functional.

Google a man named Tom Clause and look at his dancing with ataxia methods.

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I don’t feel that old, I’m not due to get state retirement till 66. I am an emergency social worker. Suddenly I’m no-one. You are right, thank you.

Ataxians have all been the position you find yourself. It is not the end of a journey but the start. You may need to make adjustments, we all do need to make POSITIVE adjustments. Look forward and NEVER back. I started my journey a few years ago now. We all start by having blood test to identify what type of Ataxia we may have or NOT have. It may be inherited or not. Doors will open for different Specialities. An enormous amount of help is available . I am with the Ataxia centre at Sheffield, you will not find a more positive centre to help you, with professor Mario and an Ataxia Specialist nurse to help at any time… This covid situation has mucked everything up. Have you had your covid jab yet? As for PIP go for it. It is a very hard and steep journey, The Citizens Advice Centre will be patient and help enormously… Ataxia UK is a font of knowledge and help. There are also regional help groups in most places to join. Remember Sir Captains Toms words which I try to follow Tomorrow is going to be a good day. Peter Ashbourne

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sounds like me. I do have a lot of faith in neurophysio but mostly for the moral support, Nice to know someone cares. It wouldbe nice to have specialist nurse monitoring asthey do with MS etc

Most importantly, PIP would continue indefintely… I left it too late. I claimed on the day of my retirement and was told thatit cannot be awarded retrospectively. I get Attendance Allowance but no car.

On the info I read it says there will be a multi-disciplinary team supporting you, there’s no sign of that here.

A brief appointment with the neurologist, gave me a diagnosis and said it was untreatable and progressive. Half an hour that changed my life.

Thank god for this site and group. My GP’s advice was that if I wanted to go on a cruise etc to do it now.

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:hushed: That wasn’t a helpful comment from your GP :woman_facepalming: But as it happens, many Ataxians enjoy cruises, I’ve seen posts.

When my local Ataxia Centre (Newcastle) opened there was a lot of promising hype about support from a multi-disciplinary team. But the Centre wasn’t open for very long, the Specialist Nurse left (possibly due to under funding) and then the Specialist Neurologists relocated.

Since being referred to Queen Square in London, I find support is there if needed. I’ve had telephone appointments with the Specialist Nurse, and NeuroPhysio, and can email them anytime.

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Dear Katebey, First of all, welcome to this site! I was diagnosed with late onset Sporadic Cerebellar Ataxia (unknown cause, progressive) at 49 years of age, although I had extremely minor symptoms starting at 43 years of age. In 2017, I had Genetic Exome testing which showed possible Niemann Pick C (NPC) disease. After having a skin biopsy, followed by a blood test, it was determined my ataxia was due to NPC disease. I’m 67 years old now and see my neurologist every 6 months just to be monitored, as there’s no cure. My ataxia has progressed over the years, as I went from using a cane to a quad cane and now a rollator. Hope this helps! My best to you ;o)

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Actually what my GP said initially shocked me then made me more willing to live each day and appreciate what I have.

It is so good hearing your stories, gives me hope.

Kate

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