Does ataxia get suddenly worse

My husband tells me I am suddenly worse, ever since the consultant diagnosed sensory ataxia, is this stress whilst waiting for test results, or is this the way it goes. My balance is awful and walking is a real task. My legs feel as if they are going to give way, and if I try to climb stairs without support, I am all over the place and in danger of falling. I know so little about this condition, I would really appreciate someone telling me what to expect from having had two/three years of these imbalance episodes, I now feel disabled.

As far as I know, all types of ataxia can worsen suddenly - usually as a result of trauma caused by an number of things. anything from menopause to viral infection can be a trigger. Stress certainly has a great bearing on the severity of symptoms.

My own trigger was an operation to straighten my foot.

Sorry to hear your struggles but I am glad you found our forum. Take care, Patsy x

Unfortunately expect anything, stress is a trigger, but enjoy the good days, bad days are a so and so and get more frequent I'm afraid. Walking, balance, touch/feel, water works, speech, writing it can all be affected. I feel disabled too but in the UK when are you disabled? I've got a blue badge at the 2nd attempt, top DLA and middle carers allowance but haven't got a clue 'when' you become disabled. I still work, just, and people say to me, rather hurtfully, 'why are you working, you're disabled', nice people. Ataxia is hard to fathom each day could be better or worse grrrrrrrrrrrrrrrrrrrrrrr

It is very hard to cope with…the ones that still work are lucky…it can effect all senses …there seems to be an overlap with Cerebellar Ataxia and MSA…the researchers ought to get this right"…it is difficult…the condition is hard to dea l with

I got the symptoms of ataxia before I turned 18. I worked from 15 til 23 when the symptoms got worse, people kept starring at me which made me feel nervous.

I have had ataxia (unknown cause) for 41 years now. yes, I have bad days when I'm walking I feel like my legs won't bear my weight and then I have good days walking in my heels. Stress doesn't help but if you can find a way of managing stress levels thats half the battle, in my work I have learnt to not stress over things I have no control over and practice mindfulness. For me having a healthy diet, exercising, getting a massage once a month and having one night a week where I go to bed early just to rest helps greatly. I'm afraid its along learning curve finding out what works for you. I don't take any medication to mask any symptoms so I roughly know how to avoid having a really bad day. I really wish I could answer your question but I guess everybody's different. Don't give up with the balance try balancing exercises or using a vibro plate trainer find something that works for you and your lifestyle

Sarah

Hi lisa 1949,

I have Sensory Ataxia as well. I am 82 - it started 5 years ago in Dec. 2007, but, for some unknown reason - more or less left me form April 2008 to Feb. 2009 - back it came, and I have it now - it has been getting worse since 2009, but at a slow rate. A neuro ENT Professor at the London Ataxia Clinic found last year it is being made worse because the brain is sending incorrect messages to the inner ear and eyes. I am still under a neuro consultant in London ( I am seeing her the week after next). A year ago going up stairs at home I fell back down the stairs from about the 6th stair and broke 2 fingers. I can only go down stairs or steps sideways holding on very carefully. Wet surfaces, coloured concrete, tiles in supermarket, wood block floors, and slopes down are all hell. I cannot go down elevators at all now. I get very, very tired, but still lead a pretty active life (restarting piano lessons shortly), but so many of my young ataxian friends on Facebook etc. are in wheelchairs, and from an early age, so this makes me feel so lucky that it did not hit me until I was 77 years old. Try to take each day as it comes, and look on the bright side (easier said than done). x

Doug Smith, Bristol.

I am 59 years young, diagnosed with Sporadic Cerebellar Ataxia (unknown cause) 10 years ago, although thinking back, I believe my symptoms started quietly a few years before I was diagnosed. I have no idea why I have this as no one in my family, as far back as I know, had ataxia except me. I had genetic testing for the known recessive ataxia's last year, which was negative. It affects my gait/balance (I use a cane when I leave my home to prevent falls), dexterity/fine motor skills, speech and swallowing, 24/7. My symptoms (especially balance and dexterity) have progressed, although slowly. I find the exercises for strength and balance and eating as healthy as possible, help the most. Yes, stress and fatigue make things worse. Ataxia is very frustrating and challenging, but having a positive attitude helps also! My best to you...;o)

STRESS that is the main cause for me. I have learned to let the little stuff go like water off a ducks back. However, today I had waffle/pancakes for breakfast. I have been in a total BIG A day. Walking, moving, sleeping, no energy, and I can focus. This the first time it has happened. I believe that it was what set it off.

I have had symptons on and of for my liftime (57). It only got serious until two years ago and it has been down hill since. Like everyone else I have had my good days and bad days. I have found that rehab helps to strengthen the muscles and is really helping.

R

I have suddenly worsen. In my speech and walking. In less the a year it has gotten worse!

My speech and walking have got worse but the mental attitude is better..I have had CA for five years.