unknown ataxia

I am unknown ataxia at the moment. It seems hard to be this. I do not really know how I can connect or link with people. I am my own set of symptoms and do not know when the ataxia actually started. I have my suspicions but no confirmation. I was born with triple x syndrome but no one else with this has ataxia too. How do other unknown ataxia people deal with being unknown ataxia?

i have swallowing issues due to weak uncoordinated tongue muscles, I have weeing issues due to weak muscles. I have balance issues. I have speech issues with certain words. I have a tremor which is worse on right side. I get migraines. I have autism due to my triple x syndrome. I have long legs and small truck due to triple x syndrome. I get lots of fatigue. I use wheelchair a lot. I just seem different to everyone else with unknown ataxia. It is lonely for me.

[wobblybee]

Hi JulieVictoria🙂My symptoms have been steadily progressive for quite a few years, and there has been speculation I may be linked to a couple of ‘types’ but the result was negative. Basic testing relating to symptoms was also negative.

I would have liked to know if I have a genetic type before my children had a family...

Even those of us with a diagnosis of Idiopathic Cerebellar Ataxia don’t experience exactly the same symptoms, there can be huge variations. I don’t have tremors but I have chronic eye problems.

I realise you’ve had a lot of testing, and I’m not suggesting it’s been overlooked....Some people have Acquired Ataxia as a result of illness-trauma-Medication-deficiency and more.

Despite not having a definite diagnosis, you would still be welcome at an Ataxia Support Group Meeting (and many of us have speech problems).

If this interests you..click on the link and scroll down to your ‘part of the country’..click and see links to contacts 🙂

ataxia.org.uk/support-servi...

🙂Or..you could join the online meetings. I can verify it isn’t necessary to speak, I joined one and couldn’t see how to unmute myself 😂 but I was still able to follow the meeting 🙂

[suzie44na in reply to wobblybee]

Hi wobblybee, If you have eye problems is that like a mitochondrial disease, if you don’t mind me asking. Are you having anymore tests to find out a diagnosis? or just living without one.Suzie

[suzie44na]

Hi JulieVictoria, I have most of the symptoms that you have and no proper diagnosis. I hate not having a diagnosis, it really bugs me. I just hope that one day I will get one. I have tremors, twitching muscles, ataxia, dystonia, balance problems, weak swallow and Asperger’s/ autism. I also use a wheelchair and scooter for going out, I can walk around my home though. You can talk on here anytime you like, you are not alone. All the best.Suzie

[Hidden in reply to suzie44na]

Thank you for replying to me. It is isolating isn’t it. I am trying to learn about it but it is all so academic. And I ain’t academic.

[naturegirl276 in reply to suzie44na]

Have you tried going gluten free? Look into "gluten ataxia".

[suzie44na in reply to naturegirl276]

Thank you, not sure if I was tested for it, probably was, but I will ask. Think I might try gluten free, does it help even if you don’t have gluten ataxia?

[PatsyIpswich]

So sorry to hear your distress. I echo previous responses, especially that you should not feel alone on here. My Unknown ataxia was triggered in late 50s and I'm 79 now .. a slow progression with time to make adjustments. Controlling weight, eating healthily and daily exercises are essential. Keep posting x Patsy x

[Hidden in reply to PatsyIpswich]

I was diagnosed ataxia in April this year. I was 35 am now 36. I think I have been Ataxia longer though. I just don’t think doctors knew it’s name until sheffield this year.

[Buffergirl]

Hi JulieVictoria I too have idiopathic Cerebellar Ataxia (still being tested) and I sympathise with you because, on the one hand we don't have a specific diagnosis (and therefore any knowledge of how things might proceed or even treatment) and on the other hand we're given this generic term of Ataxia which is so wide-ranging. I think maybe the main thing is to try and not define yourself with this disease and to hang on to those positives that are working well. Gentle exercise where possible; good nutrition especially excluding gluten and a knowledge that you are an individual and can to a certain extent influence the progress of this condition through positive thinking, relaxation exercises and avoidance of stress and anxiety. I hope this helps and I don't mean to minimise all that you're going through. You're certainly not alone.

[Hidden in reply to Buffergirl]

I have not been told to exclude gluten. I have only been told to exclude my allergies which are hazelnuts, almonds, pecans and sulphur dioxide.

[Buffergirl in reply to Hidden]

They tend routinely to test for Coeliacs Disease (gluten intolerance) but not non-Coeliacs gluten intolerance. But, in any event, it is a good idea to avoid where possible because its abundance in our foods can contribute to inflammation in the body which is not always recognised.

[naturegirl276 in reply to Buffergirl]

Yes! My son has a non-celiac gluten sensitivity. There is no test for it. He had ataxia at the age of 2. All kinds of tests, no diagnosis. I read about "gluten ataxia", put him on a strict gluten free diet and he got better! Took close to 6 months.

[Buffergirl in reply to naturegirl276]

Thanks for your message. I've opted to leave gluten out of my diet whether intolerant or not. I mean no-one's ever come up with any argument in favour of it and it appears to be in everything even cosmetics and toothpaste, often artificially added to bread etc to speed up the baking process. In short, for the manufacturers' benefit, certainly not ours.

[cocoa in reply to Buffergirl]

I follow a strict gluten free diet.

You may find helpful information on this website coeliac.org.uk

I joined for a year to get all the help I needed.

You may also find lots of advice from "Gluten Free Guerrillas" here on healthunlocked.

[ninotchka in reply to Buffergirl]

Be not so quick to condemn gluten! I went gluten-free for 9 months and nothing whatsoever improved. Also be picky about where the wheat comes from. Italian wheat is healthier than American, for instance. Now I enjoy my good whole and sprouted wheat every day. I believe that a lot of folks trying/purporting to be healthy have created a fad with the no gluten/keto/paleo diets.

[Tallguy101]

Hi JulieI also have ataxia of unknown type, even though I was diagnosed in 2007 and have more blood tests, MRI s than I care to remember.

I also took part in the 1000000 genomes project, but still nothing.

TBH I've heard that 50% of ataxia cases are of unknown type. I'm always slightly envious of people that know exactly which type they have.

I also have choking issues with certain foods, severe balance problems and also urinary Incontince issues. I take solifenacin for this which reduces the sensation. Also beta blockers and Sumatriptan for migraines, I was getting 4-5 a week, now since being prescribed beta blockers it only 2-3 a month. Then I take the Sumatriptan which works really well.

Good luck to you and stay strong.

[naturegirl276]

Have you tried going gluten free? You should look into "gluten ataxia".