It's a disgrace!: Hi everyone, Reading through... - Ataxia UK

Ataxia UK

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It's a disgrace!

penelope2 profile image

Hi everyone,

Reading through the posts two things really stick out. Firstly just how poorly ataxia sufferers are treated. Whether waiting for a diagnosis or treatment or even appointments at one of the specialist clinics takes so long. Doctors, neurologists and health professionals really need to up their game and start to care and refer us much quicker. We have to wait so long to see these specialists and gps etc don't realise that time is of the essence for us to get to see someone who knows anything about ataxia.

Had a 'telephone' appointment with a neurologist at my local hospital, and 2 minutes after telling me his daughter was a coeliac then went on to say he didn't believe there is gluten ataxia!

If I could have just one wish it would be that cerebellar ataxia was on the performance tables like cancer or diabetes, etc. Doctors would soon treat us better then.

Secondly we are all so brave and strong to keep going no matter what Ataxia throws at us 🙃 🙂

People have no or little idea how it feels, with good and bad days, even fluctuating during the day, the emotional roller coaster this entails. The fatigue and trying not to fall over all the time.

We are all different and those mountains we have to climb can be different too.

Take care and believe that some day soon people will have heard and learn about Ataxia!!!!!!!!!

29 Replies

I completely agree with you

Hi, I couldn't agree more! Since I was diagnosed with FA in 2013 it has been down to my persistence to get to see any consultants who have knowledge of ataxia which has involved long journeys that I can no longer manage. The ones I have seen at my local hospital have been useless (that is the polite way of describing them!!) My last appointment was appalling, having seen no-one for 3 years due to Covid it took 10 minutes with a locum who knew nothing about me or FA! The profile needs raising so that we don't have to put up with this treatment.

Yes, sadly true. My hubby is complaining about old age symptoms which are similar to CA but hey.. mine started 25 years ago! Moving home several times to different nhs areas has complicated my treatment and finally Covid-19 lockdown.. I really miss the neurophysio I had a few years back. Thankfully Ataxia UK is there to give support. Stay safe and don't forget to smile 😊

I agree. I feel I have come to terms with it now and just manage it as best I can with lots of rest during the day but I still do miss doing all the things I used to do. It’s good to know that there is that Help line and Ataxia UK, I have joined a group on zoom which helps a little. Keep smiling☺️

7151 profile image
7151 in reply to Knittlng

🙂yes good to not feel alone

I am part of a European study and I get seen and tested by a neurologist twice a year. I always come out of that quite depressed because they seem to focus on what I have lost and not what I can still do. My one aim in life is to mess up their scales and manage to improve my performane on all teir tests. I practice for them. One of the cognitive tests is to come up with words during one minute, begining with a letter they randomly pick. The previous time I managed 15 words and the last time I produced 18 words, I was told 11 is the average. I also pass the memory tests and all the tests they do. Actually the last consultation she actually said "there is very little difference from the first time I saw you 6 years ago" I go to the gym for an hour every day and practice all the tests. I crochet alot which helps with my small motor coordination. At home I walk unaided, resorting to walls and furniture when necessary. Outdoors arm in arm with someone else. I am 68 began symptoms at 52. I live in Portugal, I thought the other countries would be better. My impression is the very few neurologists, othe doctors, nurses and peopple in general, actually know what ataxia is. I have SCA3.

My ataxia was diagnosed 10 years back. They still dont know exactly which type although i have almost no sence of balance. One of the ways i cope is to climb. It is full body exercise including my brain.

Isabel, I salute you! You are inspiring!

I understand how you feel. Life can be hard even without having to deal with SCA symptoms.

We just have to remember that everyone, doctors included, are doing the best they can with what they have been dealt in their life.

Chose to look for wisdom rather than woe.

All the best, David

cocoa profile image
cocoa in reply to nycgeordie

It is hard to accept having this diagnosis.

When I was told that there was no cure, I decided if nobody can do anything, I will have to help myself.

I arranged to see a nutritionist and have now found out what foods to eat and what to avoid. I always suspected gluten but I have other intolerances too.

I was in a lot of pain, medication was not helping. I stopped the medication and sought advice from somebody. Now I can control it myself.

I was always active but have now had to adapt. Instead of going to a yoga class, I now practice at home. I cannot go to the gym any more but do exercises for balance and core strength daily.

Enjoy the sunshine!

coat2003 profile image
coat2003 in reply to cocoa

good o you cocoA.all the best.monika x

Absolutely agree with everything said, some fundamental changes need to happen to address these issues ASAP but I’m afraid most neuros are on a power trip and really not interested in what the everyday challenges the patients with this awful condition have to endure each and every day 24/7 and just as important what their family’s are going through trying to figure out how best to support us. How can a 10 minute appointment every 4/6 months be enough. My life cannot be surmised in that time.

I really hope that attitudes are adjusted accordingly by medical professionals I have said to one neurologist whilst in hospital that what would you want if you were in my position right now! just at that time his mouth stopped working as he didn’t say a word just pulled a face like a child that had been chastised. Well I didn’t expect anything more as he new everything about how I was feeling about how my life had been turned upside down🤨.

Stay strong friends

NO SURRENDER

Today ..I heard of the term Medical Gaslighting...

you.38degrees.org.uk/petiti...

Agreed! I was diagnosed 5 years ago and I kept saying immune and the London clinic said there were no indications so it must be genetic, after three years and letting me deteriorate fast I was in a wheelchair and they then said maybe it was immune as it was so fast. I was referred to Sheffield but the pandemic made it impossible to be seen. Now I’m seen by London twice a year and Sheffield every three months and they do tests in Sheffield that London don’t do. Needless to say Sheffield are treating me for gluten ataxia which if I’d been treated earlier I wouldn’t have lost so much cerebellum, as it’s so severe I’ll be in a wheelchair the rest of my life.

I can empathise..having had ‘delays’ myself..

🤔 I hope you don’t mind me asking..

Are you being treated with Mycophenolate

🙂 This information might be helpful..

Diagnosing and treating primary autoimmune cerebellar ataxia (PACA)

Many people with ataxia are not given a specific diagnosis for the cause of their ataxia. This is known as idiopathic ataxia.

In two new publications, Professor Hadjivassiliou (below) at the Sheffield Ataxia Centre, and his colleagues, describe a type of ataxia that could be responsible for a number of idiopathic ataxia cases.

They explain how neurologists can make this diagnosis and how this type of ataxia can be treated.

Immune-mediated cerebellar ataxias are caused when the body launches an unnecessary immune reaction against the cerebellum (the balance centre) causing damage, resulting in ataxia.

Gluten ataxia

is an example of an immune-mediated cerebellar ataxia. In patients with gluten sensitivity, the body recognises gluten as harmful and produces antibodies against it.

These antibodies travel to the brain and attack cells of the cerebellum, which results in ataxia. In this case, gluten is known as the ‘trigger’.

However, in some cases of immune-mediated ataxias, the trigger is unknown, which is when the condition is called primary autoimmune cerebellar ataxia (or PACA).

DIAGNOSING PACA

There is no specific test that will definitively diagnose PACA.

However, an International Task Force on immune-mediated cerebellar ataxias, of which Prof Hadjivassiliou is the lead, have written a comprehensive list of clues that neurologists should look for when considering the possibility that a patient has PACA.

A diagnosis of PACA can be made if certain criteria outlined in this document are fulfilled, and if an experienced neurologist or ataxia specialist has ruled out other possible causes (such as genetic ataxia).

A TREATABLE FORM OF ATAXIA

In the second article, the team from the Sheffield Ataxia Centre describe a possible treatment for PACA. They treated 22 PACA patients with an immunosuppressive drug called Mycophenolate, which reduces the immune response that causes the ataxia.

This treatment is expected to prevent further damage to the cerebellum and salvage any sick cells. Their results using brain scans and ataxia rating scales showed that those receiving treatment improved or stabilised, and those who did not got progressively worse.

Prof Hadjivassiliou said: “Identifying patients with PACA is incredibly important to allow them to receive the appropriate treatment, and early diagnosis could prevent permanent neurological damage.”

If you have been diagnosed with idiopathic ataxia and would like to explore the possibility of PACA, we recommend you speak to your neurologist about these new publications. If you do not see

a neurologist regularly, email help@ataxia.org. uk for details of Specialist Ataxia Centres.

Copied from ataxia.org.uk

Thank you I see Professor Hadjivassiliou at Sheffield so I’m aware of his studies and he gave me leaflets on PACA and Gluten Ataxia. He is currently treating me with Mycophenolate but he doesn’t hold out much hope apart from halting progression, the damage is too severe now.

Hi cupcakeWent up to UCLH last year for the fist time, tests showed no genetic cause, they wanted me to have the next level of tests as a vestibular problem I have pointed to CANVAS which I said no to. But I asked them and they did refer me to Sheffield and have first appointment in July.

I have studied many research papers. Mostly by Prof Mario's and went GF nearly 2 years ago. This I undertook completely by myself and feeling so different went on to have a private blood test for cross reactive foods, was guided through this process by a top nutritional therapist who understands the effect of gluten on the body. As a result went dairy free and rice free a year ago.

I'm very lucky, have studied anatomy and physiology so understand processes in the body. Knew that going gluten free was worth doing to see the outcome.

I am so sorry it has taken you so long to get to where you are now. Hopefully you will stabilise now.

I so wish that more neurologists and doctors would recommend a gluten free diet.

Yes can be hard to stick to and yes it might not be causing the ataxia but it is well worth trying. No medication just a change in eating patterns.

NON COEALIC GLUTEN SENSITIVITY is out there!!!!!!

And Affecting a lot of people.

Wake up doctors and neurologists!!!!!!

Take care and my thoughts are with you.

I couldn’t agree more! My daughter has been gluten-free for awhile so it was easy for me to be gluten-free which I tried for a couple of months last year what I didn’t realise until now it takes 12 to 18 months to have any impact.

I wish I had known more two years ago at least!

I forgot to say I am vegetarian so thought it was an easy jump to be vegan, This has been a revolutionary transition and has made me feel a lot better.

I still eat meat and fish, mainly for the protein and variety but mostly veg and fruit. It is hard to eat a variety of carbs when I can't have gluten or rice. Most GF products have rice flour in.

I was wondering if Sheffield have advised you to take any vitamins/supplements?Understand if you don't want to say.

I take several, some prescribed by the NT and others I take for different reasons.

Sheffield have not yet advised of any supplements, they’ve put me on mycophenolate and are trying to get that stable. I used to take multivitamins and iron tablets before they started the medication but I stopped in case they clashed and they have not replied as to whether I can continue or not. I go there in July so will ask again. My protein is from beans and pulses instead. Vegetarians and vegans tend to lack B12 which I’m keen to take.

I take a multi with high B levels, D3, vit E, omega 3, because of dairy free diet calcium,CO Q10.So quite a few,

Not been advised to by any doctor, apart from B vets that are good for the nervous system. But have yet to be told anything specific by doctors. To be honest I don't think they believe in supplements.

Again mostly on my own with these again.

But used to doing things my way with little support

(I can feel a song coming on 🎵 )

Yes it is expensive, but I hope worth it!

👍

I used to take all of them for about a year and saw no difference, hope it works for you. I had my b12 levels tested 3 years ago and it was a good level so supplements must work!

wozzer45 profile image
wozzer45 in reply to penelope2

Hi,I'm curious about why you said no to CANVAS tests. I got a CANVAS diagnosis February 2021 after almost 7 years of other testing. It was a simple blood test, apparently doctor in Queen's Square discovered causative gene - RFC1. At time of testing, 2019, I had very slight vestibular issues but have had cough for over 20 years. Now vestibular issues are a problem and I see a vestibular physiotherapist (privately) and this has really helped a lot. Last summer I was having a lot of difficulty walking by myself and thought I would need a walker. Physio exercises have helped enormously with vision and dizziness and confidence and get out for 40 min walk most days just using walking stick. Like you, I don't eat gluten. My sister is coeliac and also has ulcerative colitis. When I felt ill initially I thought it might be coeliac disease. When I went off gluten felt a lot less dizzy and skin issues I'd had for years cleared up - eczema patches ( or what I thought was eczema) disappeared and dry skin disappeared. Even though it's not causing my ataxia I've stayed off it as I do have digestive problems if I eat it and I don't want to exacerbate dizziness or skin issues to return. But knowing I have CANVAS and not gluten ataxia has made be a bit more relaxed about the whole gluten thing. Sorry, long story short , I'm curious about what next level tests are? Ps I'm in Dublin, Ireland attending ataxia clinic in Tallaght Hospital, Dublin. Also seen very infrequently, haven't seen neurologist in over a year.

Bye for now,

Liz

penelope2 profile image
penelope2 in reply to wozzer45

Hi very interesting post. Thank you.At UCLH they didn't actually say what the next level of tests were. The first level showed no hereditary/genetic reason. I have had many blood tests done on 2 occasions, there, refused the lumbar puncture. They really didn't know the cause of my ataxia, weren't really interested in GF, DF and rice free and the difference it was making to me. Maybe because I went privately?

Researched CANVAS and I did not fit the symptom criteria. I have done so much research and I know how I feel and have had so little help that I have learnt over the years to trust my own instincts.

I have one sided vestibular dysfunction and this does cause dizzines and the balance therapist was one of very few NHS professionals that actually helped.

This I have been told was probably caused by a virus.

I'm hoping that Sheffield will be able to tell me more. Again though I feel it is more important how I feel and react to things than having a diagnosis!

That maybe controversial to some, but is what I think.

If I hadn't done the research and used private nutritional therapy I would probably be much more advanced than I am.

Have stabilised for about 18 months now.

Considering the high prevalence of gluten ataxia to me it's seems so simple to try the GF diet to see if it makes a difference.

Onwards and upwards 👍

I’m so sorry ...it is awful to find out that specific therapy could have made a substantial difference ..

There are MANY PROFESSIONALS specialists, butna minority of PRICKS with a title. Please avoid those.

Hi everyone.Sorry that I have not replied personally to everyone. Thank you all for responding.

It seems overwhelming that we all feel the same way about doctors and neurologists etc.

I am hoping to do do something (don't know what yet?) About this in the future.

My first call will be to Ataxia UK.

Any thoughts on how to go about this would be very welcome.

Strength comes in numbers

👍Take care everyone and onwards and upwards!

Hi yes i totaly agréé with you ! I live in France and most people have never heard of ataxia encluding docters its taken 6 years to finaly be told i have ataxie

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