idiopathic cerebellar ataxia

[Wazzer72]

hi everyone been diagnosed with idiopathic cerebellar ataxia I am 51 this year can walk by my self at moment how bad will it get does not say on internet

[wobblybee]

🙂I’m diagnosed with Idiopathic Cerebellar Ataxia.

Diagnosed in 2011..I was 61.

My symptoms (eye problems-poor balance-dizziness-brain fog) had been accumulating over several years prior..but no action was taken by my GP until I started having unexplained falls.

It’s impossible to predict the course of an Idiopathic diagnosis ..even a Specialist Neurologist couldn’t say for certain.

So far..testing has failed to find a link. Currently, I’m waiting for results of Whole Genome Sequencing (WGS).

By the time I did eventually get a diagnosis..I’d reached the stage where a walking stick was necessary for safety. It’s all too easy to lose balance, particularly on kerbs.

I can still walk but a ‘stiff gait’ has set in, and I need to be very careful.

🤔 I realise I experience most general ataxia symptoms.

🙂 Best advice is..keep moving.

[Wazzer72 in reply to wobblybee]

thank you I have those symptoms to I need glasses for reading will I need glasses all the time

[wobblybee in reply to Wazzer72]

It is likely..if you need reading glasses, this won’t change..

🤔 Have you noticed any specific changes to vision..double or ‘bouncing vision’

[Wazzer72 in reply to wobblybee]

hi had both mri scan and cat scan my bladder is showing ok but can’t hold it in like I used to go a lot now is it part of cerebellar ataxia

[wobblybee in reply to Wazzer72]

It’s fairly common for people to mention ‘urgency’..and there can be a diagnosis of Neurogenic Bladder due to weak muscles..But, don’t assume it’s the case, always ask your GP t investigate…it may be something easily treatable.

[HoneyBe in reply to wobblybee]

hello, I was diagnosed in 2002 with idiopathic cerebellar ataxia and it hasn’t really improved or deteriorated since then. My main symptom has always been poor balance and clumsiness. I just noticed that you mention unexplained falls in your post and this has happened me twice in the last week- it never happened before. My routine has changed so I am having to walk a bit more so this is probably why falls haven’t been an issue before. I should probably get a walking stick to protect my knees and my pride. I am 51 by the way. I have an appointment with a neurologist in a month but haven’t seen one 2003.

[wobblybee in reply to HoneyBe]

Hi🙂 Re unexplained falls

Prior to being diagnosed, I started having falls. These couldn’t be explained by..tripping, slipping etc. I was simply falling after becoming unsteady on my feet, unable to react in righting myself or putting a hand out as a safety mechanism…I went with the fall just waiting to land somewhere.

🙂 It’s good you’re continuing to walk as much as possible. I was eventually diagnosed at 61, and still walk with a walking stick, although I need to be very careful due to poor balance. I also have a rollator, you can get the idea of using one of these by pushing a supermarket trolley, it strangely frees your mind and enables you to walk smoothly…that is of course providing you are still on your feet.

I’d had several near misses in falling off kerbs before I decided to get a walking stick, it does take some adjusting mentally, but once you realise how much more confidence it gives..🙂

🙂 Best wishes for your upcoming appointment.

[HoneyBe in reply to wobblybee]

Thanks so much for your kind words. I’d rather the embarrassment of using a cane than the embarrassment of falling over in public again when there is nothing to trip over. I do try to walk as much as possible even though I am slow and awkward. I try to focus more on what I can do than what I can’t 🙂

[Wazzer72]

do get double vision sometimes

[wobblybee in reply to Wazzer72]

I started off with Prisms in my glasses to correct double vision..this was satisfactory for a while, but when I’d reached the highest grade of Prism, something else was tried…Occlusal Contact Lenses.

These lenses work in much the same way as Prisms..they‘re partially obscured and block light that causes double vision. These worked better for me ..but I have arthritis and I’m righthanded 🙄

A Botox injection into my eye muscle didn’t give the expected results…but it can be very effective for some people.

Finally..Strabismus Surgery was suggested..this is basically Squint Surgery and can give good results.

🥳👍It was successful

[Wazzer72 in reply to wobblybee]

thank you got eye test in June thanks for your advice

[7151]

Unfortunatly there are so many dont knows ! Last year i had never heard of ataxia ..i ve done so i much recherche ,i belive i ve had it for years but it basicaly went unnoticed ..my dr knows nothing my physio is learning with me ! My neurologue cant pin point it ..i ve had loads of scans and tests ..so i live with the walking problème..i find thé trembleing thé worst but it dosent happen all thé time ..i m lucky to have kids that adapté with me ..i can still drive ..manage supermarchés with difficulty .. its à very rare illness and we are on a long road ...good luck

[Ostap]

Like everyone has commented each case is different. 5 years (60-65) have been dramatic for me. The tremors in particular. Good luck.

[Cupcake12345]

I was diagnosed with idiopathic cerebellar ataxia late 2016 aged 42, three years later was in a wheelchair and then due to the rapid progression doctors decided it was autoimmune, everyone is different, the idiopathic means that doctors are not sure of the cause. I too have double vision and bad focusing, can’t write, slurred speech etc

[klazien]

My diagnosis of Cerebellar Ataxia came in 2005 and till then was very active with no inclination of what was to come.

I went from a walking stick to very soon one elbow crutch, then soon after this, two crutches and a long time later a rollator. I cannot stand without holding on to something. All this is inside.

My MRI shows only a very small shrinkage of the cerebellum and nothing else.

Outside for the last 10 years at least, I use a wheelchair. Luckily my husband help me with everything and luckily no pain.

My double vision is quite severe and my other sight problems are probably not related to the Ataxia. But not being able to see does affect my security in going anywhere.

My left arm/hand has been uncontrollable for years and therefore useless.

The right one has a tremble. I don’t know if this is connected. The neurologist in Cardiff does not know either but he did say that it can mimic Parkinson’s disease.

I used to go to the Ataxia centre in London and saw Dr.Giunty there but London was too far away.

I would advice you to do as much as you can for as long as you can but be aware that it will get worse.

[wobblybee in reply to klazien]

🤔 I’ve had several ‘treatments’ from a NeuroOpthamologist for double vision.

The first decision was to try Prisms in my glasses. After I’d reached the practical maximum grade, Occlusal Contact Lenses were suggested. Arthritis made these too fiddly for me but personally I preferred them to Prisms.

After the Contact Lenses proved difficult for me, I tried a Botox injection into my eye muscle. This can give very good results to some people with double vision, but I’d previously had Iritis which caused severe inflammation, and unfortunately Botox couldn’t help.

But..I went on to have Strabismus Surgery, this is often called Squint Surgery, and amazingly it did ‘cure’ my double vision.

😂 I’ve just realised I’ve repeated myself

I’m so sorry you haven’t had any relief in dealing with your double vision, I know myself how much impact poor vision has on balance. As well as Downbeat Nystagmus, I’ve also experienced Oscillopsia…and of course Iritis.

Ongoing eye problems relating to Iritis have overridden the benefit of Strabismus Surgery. Further surgery may be possible..

[Rezzy66]

Not all is a gloomy future. I was diagnosed with the same at the age of 50. I’ll be 57 in a few weeks. At one point I digressed to a cane but I also tore an acl due to a fall.

I no longer use a knee brace or a walking stick. The unsteady gait is there but I’m working on fixing that as well as trying to move quicker. The proper foods and supplements with plenty of exercise has kept me out of a wheelchair. I also still surf and fish but can’t dribble a ball though. Everton will have to find another striker.

Idiopathic is the fancy term for we don’t know. However, my GP just ran a genetic deficiency test on me and discovered I have a severe genetic deficiency for MTHFR. Basically inherited both genetic mutations from my parents and cannot process folic acid. The genetic tests for ataxia do not test for this mutation in the US but children are commonly tested. If you dig deeper a lot of the cerebellar damage was not caused by something we did. Rather, it was caused by something our bodies could not do.

If anything, ataxia gives me a reason to hold onto my wife a little tighter and I’m thankful everyday I get up.

Have hope and keep faith.

[Wazzer72 in reply to Rezzy66]

cheers rezzy66 you find out more about the condition from other people thank you

[Wazzer72 in reply to Rezzy66]

rezzy66 do you find that it effects your bladder can’t hold it in like I used to

[wobblybee in reply to Rezzy66]

It’s well known that deficiencies can trigger ataxia..TBH I haven’t actually asked if I’ve been specifically tested for deficiencies..If the problem is Identified early enough, it can have a very positive outcome.

[february]

Dear Wazzer72, I'm 69 years old and I was diagnosed with Sporadic (Idiopathic) Cerebellar Ataxia when I was 49 (although I had extremely minor symptoms starting at 43). Over the years, I had genetic testing for the more common Ataxia's, always negative. Then, in 2011 I found out my Ataxia was due to Niemann Pick C disease (NPC). I had genetic 'exome' testing and a faulty gene was discovered. Therefore, I had a skin biopsy followed by a blood test had Ataxia due to late/adult onset of NPC! NPC in recessive, which means I got one faulty gene from one of my parents and an unknown variant from their other. I didn't use any aides until I fell and really hurt my back. Eventually, I needed more stability and started using a quad cane. Four years ago I had a total knee replacement and I've used a rollator 24/7. Everyone is different in terms of progression. My balance is really compromised . Try to eat a healthy as possible and exercise safely. My best to you ;o)

[wobblybee in reply to february]

Hi 🙂

It’s good to hear from you🙂

🤔 Because some ‘symptoms’ can be traced back to my early teens, my Neurologist has suggested the actual cause might be a Recessive gene.