New to Ataxia diagnosis : Hi I have recently been... - Ataxia UK

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New to Ataxia diagnosis

Linda33
Linda33
14 Replies

Hi I have recently been diagnosed with ataxia, they have not found which type yet, my neurologist has taken blood for everything, I have had 2 MRI scans and a ct scan recently, previous to that every bladder test available, but everything shows up normal,

Things started around 3 years ago, having a lot of problems with my bladder, and tingling feet and legs that just don't stop, I have started getting bad cramps in my legs, feet, neck and bottom of my ribs

I had prolapse surgery and Botox treatment, to my bladder.

My bladder would only empty by a few MLS, I now self catheter all the time, my balance is horrendous, I topple over nearly every day, hurting myself a lot. I can't bend down and have no strength in my lower legs I also get really bad episodes of dizziness and have to sit down, I can be anywhere even in the shops, I am not on any medication for it. I have a healthy lifestile, eat a sensible diet, was fit could walk for miles now I just can't, I stagger a lot, even been asked if iv had a liquid lunch at work, I don't drink unless socially.

Any one help or suffer from same, I am looking for advice on how you deal with it on a daily basis,

14 Replies
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wobblybee

Hi Linda 🙂 It’s highly likely that many of us, including me, empathise with the symptoms you’ve described. It must be especially stressful to constantly self catheter. Currently my bladder problems are restricted to frequency, I sometimes wake several times during the night and always get up. Often it hardly seems worth it , but I’m always worried in case I lose the urge completely.

My MRI’s show mild Atrophy, and I’m not yet diagnosed with a specific type, but there’s a strong suggestion that it’s a type of Recessive Episodic Ataxia.

On a daily basis my ataxia is debilitating, as you say bending down can lead to terrible dizziness, I dread washing my hair. But then so many tasks and movements are affected, you either have to bend down, or tilt your head back 🤦‍♀️ It’s reached the point where I tend to move around keeping my head as level as possible.

I don’t take any medications, although I know there are several recommended to help with specific symptoms. As far as dizziness is concerned, I was diagnosed with BPPV (a type of vertigo). It’s possible to have therapy for this, sometimes it helps.

Do you use any aid to help with stability and keep you safe🤔 A walking stick or a Rollator 🤔 Either of these are a useful indication that you aren’t drunk. I have both, and alternate depending on how unsteady I feel. My gait is actually much better with the Rollator, I’m much more jerky using the walking stick, and it’s more exhausting.

I haven’t worked for several years, I gave up long before retirement because I felt pressure of the job was making my symptoms worse.

I deal with my situation by taking it day by day, and just going with the flow. Being Episodic means I have the same symptoms most of us contend with, but at any given time these can escalate and I just have to rest and simply zone out till I’m back to my new normal 🙂 xB

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BlanketTime1

I like the advice about the rollator. when I park in the disabled bay people glare at me and then down comes the ramp on my wheelchair days or I hobble down with my walker and they look sheepish, which I enjoy :-) I didn't know urinary issues were part of ataxia.

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Susie1972

I didn't know that part either about bladder?😯

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Edward1943

First diagnosis is always a shock but my advice would be to concentrate on what you can do rather than what you can't do.I get great satisfaction from swimming.

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Susie1972

I wouldn't be able to get in and out of the pool??!

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lottiejemma

I have to get wheeled to the swimming pool and hoisted in and out, most swimming pools have disabled help. I do not like it , but either that, or no swimming, I can only go if my daughter takes me,( oh my oh dear), the problem's with Ataxia, who would have thought there was so many, I am exactly like you Linda, so we are not on our own Take care my dear, enjoy yourself while and as much as you can --- I am 77 now, so I TRY not to let things bother me , now that is a HAHAHA, I am forever writing on our Ataxia share, Love and GOD Bless ---ALL

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BlanketTime1

welcome. I also have an unspecified ataxia. it's very frustrating and quite scary. my tests came back normal so far, yet I suffer. once I parked outside the doctor's office and carefully maneuvered out of the car. a man on a bench drinking from a brown bag gave me the thumbs up *sigh.

I've also suffered from ridiculous leg weakness. stretches help. perhaps you could try physio. some patients have been fobbed off with doctors telling them it won't help, but we tend to disagree with that and it's worth a try even if they just help you avoid falls. some of my leg weakness is due to transverse myelitis, but some of it is more recent and my spinal scan was clear this time. I know it's scary, but it sounds like you have someone working for you being very thorough. keep asking questions and know we are here to support you. stay strong.

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Susie1972

Hi Linda. Sorry to hear you are one of us lol!!. In 2 years I've had 4 Mri s, 2 cts, lumbar puncture 2 lots of nerve tests gallon of blood taken, normal and Nero physio... tests came back normal apart from brain wastage in cerebellum..And, as they still can't pinpoint a type they say it idiopathic ataxia. No cure, No meds... see u in 8 months..... felt a lot left hung out to dry with neurologist so did a lot of readin on Google and went to my gp, they wernt much better but have been 're referred to physio, as I have trained myself to walk wooden with extended leg/knee syndrome ( thru fear of falling this has occurred...). I am trying baclofen too for stiffness n cramps in both legs.. Only been on these a week. I tried to get buspar but gp said no.... day to day, just gotta get on with it. I prob won't ever walk backwards, jump, stand with my eyes shut, tackle going downhill, dance etc like rest of us wont again.... mine is non progressive thank god but I can't leave house without my crutch or sholley trolley. Took I while to get me mojo back n am gonna train hard wen I finally get back with physio 💪💪. Good luck and take care, don't forget u not alone althoughit feels like it.... If u feel like a moan. Just put it on here lol xx

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DeniseLB

I agree with everything that has been said, I was terrified when everything went wrong. I had always worked and the first thing for me was I couldn't even travel on a train anymore so work was out of the question.

We all cope in our own way, but there is some hope, first you need to come to terms with the way you are and then you have to look at the things that you can still do. Not easy, I found I could still touch type, then I worked at writing my name again, then and it really does go on. You are not ill unless the hospital found something that you may die from, they did not with me, so you have to on.

You then have to go through the process of explaining it to everyone else, quite frustrating! Whatever the bottom line is that our brains are no longer sending the signals in the correct way to the rest of our bodies, I describe it as being given someone else's hands and feet and finding a way to make them work. We can still do everything but not necessarily in the same way that we did them before and you have to be prepared that it will make you really tired. I put it like this the things that were normal before now take a lot of effort to think about. Physio worked great for me, but I do need a crutch to walk and if your GP does not put you forward then look to your local council.

Oh and Wobblybee is a great one to listen to as she helped me so much in my early stages.

The one thing I learnt through Physio was that although it will hurt and maybe a challenge the more exercise we can do the longer the rest of our body will stay fit and well.

Good luck mate!

Denise xx

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february

I'm 64 years old and just found out (in 2017), through genetic exome testing, that I have ataxia due to Niemann Pick C disease (NPC). NPC is very rare! I was originally diagnosed at 49 years old with Sporadic Cerebellar Ataxia (unknown cause), although I had extremely minor symptoms starting at about 43 years of age. Over the years, I had genetic testing for the more familiar dominent and recessive ataxia's, all negative. My neurologist suggested exome genetic testing, as he suspected I had a rare form of ataxia, ARSACS (Autosomal Recessive Spastic Ataxia Charleoix-Saganay). Although negative for that, the testing showed I had a single NPC gene. Therefore, after a skin biopsy and then a blood test, it showed positive for NPC disease. It was determined I not only have a single NPC gene, but an unknown variant as well. NPC is recessive, which means on got the gene and unknown variant from my parents. Anyway, my ataxia effects my gait/balance (I use a four-pronged cane or rollator), dexterity (writing/printing/fine motor skills), speech (slurred), swallowing (coughing/sometimes choking) and vision (vertical gaze palsy/slow to focus/vision sometimes blurry). I also get dizzy at times, especially when over-tired. I have some incontinance trouble, although it's manageable (had past TVT surgery) and I've had two children...,ha! Over the years, I've had three MRI's and all they show is continuing atrophy of my cerebellum as my ataxia is progressive and has progressed. Physical therapy helps, as does aqua therapy (water) and stretching muscles daily (for me). I also exercise (safely) for strength and balance (on the carpeted floor or holding onto something sturdy). You can find disabled exercises online, even ones you can do while sitting in a chair. You are not alone in your journey!!! My best to you..., ;o)

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Linda33

O wow, thankyou all for replying, i now know I am not alone in this, I will take your advice and try to control it a bit better, though my balance is a big issue and do not use a cane or anything, I always make sure there is something or someone to hold on to,

At the minute I still drive as when sitting down i don't feel any symptoms, but when standing it's awful.

When I do have a turn I've learned to sit down. Otherwise my legs feel like they are wobbling and go from under me or topple over and as iv been hurt a few times I have learned it's easier to just sit straight away that way I don't get hurt.

Had to get up last night and ended up sitting on the floor for what felt like ages to get back strength to get back up.

I am 52 always up till last year worked full time I owned a shop.

I'm not sure if my bladder issues are related. I have been told I'm not suitable for nerve treatment because of my neurological symptoms. It is hard with the catheters. I have noticed a difference in my sight and focusing at times.

I am not entitled to any help although I do use the disabled toilets as I don't have the option to hold on anymore, sometimes they are closed and I have a terrible time.

Excersice is an issue as I can't even manage to take the dogs out without falling. I have been referred to physio again, as original guy has left and I have to go through the channels to get another, swimming is an option but the local pool is 30 miles away. I'm in the middle of nowhere,

Thanks again for your words. I have had a look at some posts and sympathise with you all x

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KiwiBob
KiwiBob
in reply to Linda33

I will be 53 next month. I have been having problems with Ataxia for around 15 years.

If I set down and rest the Ataxia symptoms go away.

I still drive a car but gave the motorbike up.

I have been on the sick from work since Christmas as I could no longer cope with working.

I find a walking stick is very helpful. I also have problems with my bladder but not all of the time.

When I am having a bad day I set in front of the tv. When the adverts start I try and get up and do a small bit of housework then wait for the next avert and do more housework.

That way I am on my feet for a few minutes at a time and I am still doing something but I am able to rest in between.

It can take the hole day to do the house this way but at least it gets done.

Good luck and don’t give up.

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stedman

Hi Linda33,

wobblybee seems to have covered your queries well enough so I will be brief.

Medication for Ataxia: Blood thinners, to allow more blood to the Brain, vitamin B6 & 12 + riboflavin nourishment for the brain, occasional Paracetamol to subdue anxiety and a course of pure coconut oil as needed, I had mine, spread on toast. A GOOD CLEAN DIET, CUT DOWN OR ELIMINATE FROZEN AND PROCESSED FOOD where possible. We trashed the microwave years ago, turn off the Wi-Fi, computers and all during the night.

I have a great Medical Team and do as they tell me. I feel that I have improved through the years and have learned to accept my diminishing capabilities.

I live on the memories of how good I was before Ataxia ;-) ;-0

I have no medical training, please run this by your Doctor for a Professional opinion!

Good luck and God bless.

Stedman✌

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ww-wibblywobbly

Hi Linda,. Welcome to this forum. As you can see we all suffer from more or less the same symptoms. My ataxia is genetic, but at the moment the gene is unknown.

I did try baclofen a few years ago for spasticity all through my body. It worked really well for a couple of years and then my body didn't seem to like it anymore and it made the spasticity worse. So I no longer take it.

As others have suggested a good physiotherapist can make a huge difference. Regular safe gentle exercises and regular stretches makes a big difference to what you can still do and the cramp like pain. Also exercises for balance.

I have found that the progress is very slow but nonetheless there's progress over a period of years.

I also have a problem with my bladder for which I take ceris which I find really helps.

The other things I do, is take vit B12, eat healthily, take a mushroom concentration from health shops to boost my immune system and sleep loads.

I have a siesta of 2 hours nearly every day.

I also take mild antidepressants as I can't manage without them.

Please feel free to air your thoughts on here.

Take care

Love

Alison x

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