I don’t understand why neurologists don’t understand ataxia. What’s hard? If you have something wrong with a gene, then you will have whatever that gene isn’t doing properly. Cerebral ataxia should be even easier for them. Do they not know what the cerebellum does?
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I completely understand your frustration. It has always been my feeling that because a doctor doesn’t have your particular illness they do not really know what’s going on with you. They might know what’s causing it but they really don’t understand. 
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Are you being seen by a Neurologist who actually specialises in Ataxia. Not all Neurologists are the same… Generally speaking they will all know about ataxia, but some have more expertise than others, they have a specific interest.
The Neurologist who actually diagnosed me specialised in MS ( I live in the UK, and because of our health service NHS, we don’t get to pick and choose specialists), he asked if I’d like a second opinion from a colleague who specialised in ataxia. As it happens the diagnosis was the same, but this particular Neurologist recognised I had ataxia as soon as I walked in…
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Beryl, I don’t go to Sheffield (which is nearest) but am thinking about doing so. Trouble is: what can they do? In your opinion is it really worth going?
Speaking for myself, and I’m still considered Idiopathic, I’ll pursue any opportunity to find out the exact cause of my ataxia. I’ve been fortunate to have been seen at one of the Ataxia Centres (now closed), and following on from that I was referred to UCLH Queen Square, which led to another referral. Since then I’ve been offered an appointment with a Neurologist that specialises in Mitochondria.
What can they do…
Realistically I don’t expect a return to normal…but I do expect to be told if there are any new therapies, medications etc that can make a difference to the daily challenges
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Chas, they also want to send me for sleep apnoea tests. The virus is making it hard, but every time they mention it, I recall you once said that such tests were unnecessary. Why did you say that? As Beryl has said there is no picking and choosing within our health system. And if we don’t do as they recommend, they might just wipe us off as their list.
I don’t recall ever saying that! I don’t have super faith in sleep studies because of two things. My brother had one. His doctor recommended it. He didn’t have any sleep problems but the sleep study folks were trying to sell him an expensive CPAP machine. Most senior men wake up more than once during the night to go to the bathroom. I can’t wait for the sleep folks to come in those times to remove all the wires. When you gotta go, you gotta go!
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For over 15 years doctors always said I’m a mystery even though my M.R.I scans clearly shows the cerebellum is no longer active…l got fed up with doctors and physiotherapist saying they can’t treat me because they don’t know enough about my condition. So I decided to listen to my own body and treat myself in the passed 2 years I’ve gone from zimmer frame to walker to walking stick. It’s was a slow process but I expected that,
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It’s certainly good news that you’ve experienced such a dramatic improvement, Anthony. Did your Neurologist suggest you had any specific type of ataxia
Hi BERYL Not too sure i have got a letter saying some long words i can’t possibly pronounce i will take a look and get back to you. All I know is the cerebellar part of my brain is completely white and the nerves are dead or damaged looking at the scan .Now they say my ataxia is by my nerves or something I don’t think they really know to be honest. It’s been a long road i never thought I would be able to walk without the walker it was just practicing on grass, bit by bit getting further and more confident. I know i will never walk properly again and don’t know how long I can keep this up but the improvement in a year by determination .one doctor says I’m not improving im just slowly down the progression… who knows im still trying to understand this condition.
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Sorry Chris - may have been somewhere else.
Did you mean Chas not Chris?
Oops, I mean Chas - sorry.
Peter
Had to laugh because I knew who you meant. Just breaking your chops my friend. Have a nice day.
Well, anyway - is there a way to change your name on this system. I don’t like being cross_eyes any more. Can’t remember why I ever chose such a daft name.
Best way is to create a new account using the name you want and like. Just include in the new account registration that you were cross eyes prior.
All the neurologists can do is read up on the very few published studies. I have had some doctors seriously try to research SCA in order to help me and they still came up short.
Each of us can improve our functionality and wellbeing, but it does take a lot of work and sacrifices.
Staying at a low body weight, low stress, a strict healthy diet, daily walks, and most importantly SLEEP, has helped me drastically in the past. I know what I need to do, but it is always easier for me to put my family and house first.
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I have read responses which cover most bases but would just add two points:
- age matters. I am 78 and cant expect to retrain my brain but use it or lose it.
- falls, broken bones, loss of confidence and inability to get up off the floor are all things you need to avoid so care is essential.
I hope that helps. Dont forget to smile xx
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