HU can be so informative providing desperate people with hope that is not provided by doctors, neurologists and the medical professionals, so I mean the NHS!!!!I know this is controversial with many but unfortunately those of us who are under the London or Sheffield clinic have taken so long to get there that irreparable damage is done in this time.
The big question is how do we raise awareness to the point where it doesn't take 10 years for a diagnosis. Where patients actually question what is happening to their balance and speech etc and neurologists will actually do something to help us.
Those of us that are motivated, desperate enough to do our own research, which the neurologists should be doing through their jobs, spend a lot of time, energy and money to try to get answers.
Vitamin deficiencies, food sensitivities yes I am talking about potential reversible ataxias. Again controversial.
And while moaning, where are the Neuro physios, talking therapists etc that should be available for long term health conditions. I was told on my second visit to a NHS Neuro physio "there was no more they could do to help me" again lots of my own research for suitable exercises.
Excuse my moaning but if only we could turn this situation around for the benefit of us all!
Best wishes to everyone.
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penelope2
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Yes, a sad state of affairs. However, I am 81 and count myself fortunate that the internet and Ataxia UK have kept me focused. Things were far worse when I was born. With the internet you can access so much information. Stay safe and don't forget to smile x
I totally agree with Penelope 2 there is definitely not enough research or money going into Ataxia
My son got diagnosed in 2012 and was told early on that there would not be a cure or much help in his lifetime. You really have as you say research and keep trying to help yourselves . Ataxia doesn’t get the publicity that other illnesses gets. Keep positive and strong everyone
🙂 I agree with you Patsy..where would we be without the internet. It is a comfort being able to access information , and digest it at leisure…without the constraints of a short appointment with a Neurologist.
I have Idiopathic Cerebellar Ataxia..confirmed by an MRI showing Cerebellar Atrophy, and symptoms. So far..genetic testing has failed to find a definite link with a specific cause but..I do have a 70% link with a Recessive Ataxia. Whole Genome Sequencing is being done..hopefully that may give an answer.
Yes new testing is giving some hope but at my age, it isn't worth it. Healthy diet, control weight, daily exercise (habitually first thing in morning) and of course logistics to maintain independence and dignity. X
Hi I know it makes me furious - the only bit of advice my husband has received in 5 years of visiting many so called experts is to keep his core muscles strong. The cause of his ataxia is unknown but has tried many supplements and one gave him instant relief from what he described a cement mixer inside his head - he is reordering some more at the moment so when I get the name/brand I will forward it onto you. Also he had some neurological neutrogenic testing looking for polymorphisms as opposed to full blown mutations which the neurologist are looking for - for him this revealed that he does not produce enough GABA and uses far more B6 than other people so this gave us concrete things to supplement and I think this has helped considerably with fatigue. lifecodegx.com/nervous-syst...
About 15 years ago I was diagnosed with idiopathic cerebellar ataxia in London and told there was no cure.
Since then I have taken matters into my own hands. I worked with a nutritionist privately and found that I have many food intolerances. I now eat a very plain diet and use supplements.
I have tried repeatedly to get B12 injections because it has always been low. If you can get a diagnosis, it is difficult to get injections through the NHS. I have been privately for injections, and I do feel a difference.
There is a forum for Pernicious Anaemia Society here on HU, with lots of useful information
I had exercises ‘prescribed’….several times, but have a problem being motivated. Yesterday..I joined a group session with a private NeuroPhysio..and she was wonderful the way she motivated the group…I actually enjoyed it.
I'm glad you enjoyed it. Was it online? I used to do yoga with a group before covid and the yoga teacher was great, very hands on, it is different doing it by zoom. She had long covid, added to that I have recently stopped driving, now just do exercises by myself at home, it's so much harder with low motivation 😗
🙂 It was local..recommended by someone in my Ataxia Support Group. He’s being going for a while, and he asked the Physio to come and talk to the group.
She was lovely, and had us do some basic exercises. It’s her actual approach to exercise that’s made all the difference to me..she makes it fun rather than a boring chore. I felt I’d worked up a sweat…but we laughed a lot too. I’ve never had this experience with anybody else. 🙂
Hi Driven1 Have spent hours doing research, reading research papers and review papers.
Self diagnosed with GA, the wheels of the NHS move so slowly in the UK. And when you eventually get an appointment with a neurologist they don't think it is possible to have a gluten related autoimmune ataxia.
Professor Hadjivassiliou says that it might be 40% of idiopathic ataxias are gluten related. GA numbers are higher than all the hereditary ataxias put together.
I am trying to get a feel for numbers that are idiopathic, acquired and hereditary.
These are not talked about probably due to the number of years to get a diagnosis.
Yes I agree with you, being proactive, with a focus on your own health is the way forward. However helping others who may be further down the path or even at the start of their journey, to raise awareness of private tests and supplements that may help stabilise their ataxia, whatever type, is in my opinion the right way to go!
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