Ataxia in disguise – Ataxia

Ataxia in disguise

Ataxia in disguise

Carol talks about her seven-year journey to an ataxia diagnosis, but the cause still remains a mystery.

It started for me in the summer of 2014. We moved house and the first signs of ataxia appeared which I put down to tiredness and stress. In my madness, we also took on a rescue dog, a friend Dog after haircutfor Meg our Labrador. Luckily the dogs got on well. Then we had the wonderful news that our daughter was expecting our first grandchild. So with all this going on it is not surprising the balance, co-ordination and fatigue symptoms I was experiencing, were dismissed and pushed to one side. The stairs indoors were steep and luckily already had a bannister at each side which helped me but, then again, disguised these symptoms I had.

It was while doing a walking meditation that I had to face up to it. I had a problem. Stumbling and lurching about hadn’t gone unnoticed by my yoga teacher.

It worried me holding our new grandson and I always made sure that if standing, I could lean back against a wall or worktop for support. When my daughter went back to work, my grandson would come one day a week and we would go to the local ‘mother and toddler’ group. Walking there and back was fine, I had the buggy to hold onto. But in the hall with lots of little ones on the floor, then I had to pick my way very carefully through them, this was a very real problem!

My GP referred me to the Ear, Nose and Throat clinic. I had tinnitus and hearing loss in one ear as well. There were countless tests and an MRI scan. A vestibular hypofunction was diagnosed, possibly caused by a virus. My speech was starting to be affected in 2016 and the ENT consultant just dismissed it.

In 2017, a neurologist told me that everything was ‘normal’. My family were very relieved but I knew that I had a problem.

In 2019 I saw another neurologist, had another MRI and a nerve conduction study, none were conclusive. I was feeling overwhelmed, frightened, alone and anxious. What was happening to me?

It turned out the second brain MRI scan was not normal, and another neurologist said on re-examining, the first wasn’t either! The cerebellum was showing signs of atrophy and did not look as they would expect it to. A letter arrived telling me that the diagnosis was “late onset cerebellar ataxia”.

This very difficult journey (that has not finished yet!) has taken nearly seven years to diagnose. Perhaps longer for some, and shorter for others. Management for me over the years has been regular exercises and trying to stay motivated. But for me, the physical symptoms were just as bad as the mental effects. Anxiety, not knowing what was happening to me, was it all in my ‘head’, (pardon the pun!). Saying I was fine when I wasn’t, feeling frightened and worried. Not fully owning up to myself and my family how I really felt. With very little support from health professionals, and waiting for such a long time between appointments, and being told conflicting advice.

My thanks to the private neuro physio that I saw at the start of my journey, and although scary at the time, his diagnosis of “there might be a problem with your CNS” made me feel I was not going mad.

A friend who has ataxia, told me how gluten can affect the nervous system possibly causing ataxia. I did lots of research and, out of desperation, went gluten free in September 2020. There have been several changes to my symptoms for the better. Apparently, I was tested for gluten sensitivity with the other many blood tests, it was ‘negative’. But until someone tells me something different, I will be gluten free.

Today I feel better than this time last year, there are good days and bad, I try to stay positive. Also, a thank you to Ataxia UK for information and friendly advice and to the Farnham support group.

Carol in front of castle


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