Our members share there own real life story, the challenges, symptoms and their journey with a balance disorder.
Tom’s Story
Tom has been a member since 2019, and with the active support of his wife Sue, they have together pursued answers to the many questions a balance disorder presents us all with. Please read Toms story of his journey and his tenacity in seeking a life more balanced.
Hi, my name is Tom and I have a balance condition the same as all of you. My story begins in early 2019 when the first thing I noticed was that I had trouble standing on one leg but didn’t really think much about it. But since that first day, my balance problem has got progressively worse.
I first saw my GP who referred me to an NHS Neurologist at my local hospital in January 2020. She gave me a thorough examination, watched how I walked and tested my hearing and strength in my arms and legs which she felt were probably nothing to worry about although she made arrangements for me to have blood tests and an MRI Brain Scan. She ruled out Parkinson’s Disease which was a relief and the blood tests came back as ‘Normal’ but the Brain Scan showed some evidence of micro-bleeds on the brain. So, after a further appointment with the Neurologist later in the year, she made arrangements for me to have another MRI Brain Scan and Lumbar Spine Scan as I was beginning to feel even worse. The Brain Scan showed no change and the Lumbar Spine Scan just showed some evidence of age related degeneration of the spine but nothing to be concerned about. The diagnosis was possible ‘Cerebral Angiopathy’. As this diagnosis was not clear the Neurologist arranged for me to see a Professor who deals with Balance disorders at the Neurology Department at the University College in London. I attended this appointment in December 2021 but unfortunately the Professor was unable to see me at the time and I saw his Registrar. He carried out a lot of tests but said he was not entirely sure why my balance was getting worse and said he would arrange another appointment with the Professor in London in 12 months’ time.
As I was feeling a lot worse by then, I arranged to see a private Neurologist who deals with balance problems. He had access to my Brain Scans and his opinion was that the balance problem was caused by a cloudy area in the brain and his diagnosis was ‘Central Vestibular Dysfunction’. He said there was no cure but exercises designed by a Vestibular Physiotherapist may help. He also arranged for me to see a Senior Cardiologist privately who confirmed that I had no heart problems but he did increase my blood pressure tablets as a precaution. In December 2022 I received another appointment to see the Professor at the University College in London who, after reviewing both my brain scans disagreed with both the previous two diagnoses and his opinion was that the balance problem was caused by Arterioscolscis (small vessel disease) but thankfully not caused by a stroke.
I also attended the London Road Clinic in Leicester for an expert opinion and was referred to the Leicester University for advanced tests regarding my balance. The result of that was ‘Multi-Sensory Balance Disorder’.
Initially, my symptoms were of feeling slightly imbalanced when I turned around quickly and after I had been standing still for a long time but I was still able to do most things. As time has gone on, though, I have got progressively worse until now I have a problem getting up from a chair and walking in a straight line for any distance.
I also I have a fear of falling backwards and have the debilitating sensation of feeling unsteady all the time whilst standing and walking. I have fallen on a number of occasions, thankfully not causing too much damage to myself, but in January this year I fell down the stairs hurting my back and my leg which has made me limp and is, therefore, making my balance even worse. I have now lost a lot of confidence.
I maybe should mention here that many years ago, I did suffer a severe bout of vertigo which knocked me off my feet for over a week before clearing up with the help of medication. I do wonder if this in any way was the start of my problems and has lay dormant over the years.
Luckily my wife is very good and helps me all the time, supporting me physically and mentally. My daughter and her husband also help out a lot, taking us on holidays and helping with shopping occasionally. My grandchildren are very supportive and understanding as well.
Before I had all these issues, I enjoyed playing golf, going to football and cricket matches, music concerts and seeing tribute bands play on a regular basis. Although not a heavy drinker, I also enjoyed going to the pub and attending many social occasions. I am now unable to do these things and I really miss that.
I am on the following medication: Sulfasalazine, Perindopril, Simvastatin, Levothyroxine, Omeprazole and Latanoprost eye drops.
I am not taking any dedicated medication for the balance disorder.
I am doing the exercises as advised by the Neuro Physiotherapist but I don’t believe they are doing any good but I know they are not doing any harm either.
This condition has made me realise how supportive my family are especially my wife who is a ‘glass half full’ person – the opposite to me and although I am resistant to talk about my condition to my friends and colleagues, I am surprised how supportive the few I have told, are.
So my advice is to talk to others about your condition although I am not very good at doing this myself.
The Life on the Level Support Group has been a great help to me as I realise I am not alone, as listening to others, I sometimes feel lucky that I don’t have symptoms as bad as they do.
I feel perfectly normal when I’m sitting or lying down but because of my balance problem, standing and walking, I am unable to do simple things about the house like changing a light bulb or putting the dustbin out. I also miss doing jobs like decorating and gardening even if I didn’t enjoy them before I had this condition. It does make me feel depressed and worthless.
Finally, even though I have been given four different diagnoses, I would like to say I have not given up hope in finding an answer. In January this year I had further advanced blood tests for vitamin deficiencies which were all normal. I also had a Nerve Conduction test done which has shown an Asymmetrical Neuropathy which shows that my nerves are not sending the right messages to my brain. As a result of this I have an appointment to see a Senior Neurologist privately in April.
Recently, I saw my GP for a routine medication review and he has arranged for a Pharmacist to check my medication thoroughly. My GP also has also arranged for me to have a Cervical Spine MRI scan to see if the blood is actually getting through to my brain adequately. Hopefully, these tests may give further clues as to why I am so imbalanced.
So – as Professor Rae said recently – There is always hope – don’t give up – keep looking for answers.
Tom.
Thank you to all of our members who have bravely shared their life stories with us. We hope these stories help fellow sufferers feel less alone, and for the general public – provide valuable insight into the severity and life restricting nature of balance disorders.
Thank you to our Balance Warriors!
Please share your own story with us, so we can reach and help even more people. All are welcome to join, whatever your balance condition and where ever you live.
Please come and join us if you feel we can help and your don’t wish to face your challenges alone.
Please remember that our members experiences, treatments and opinions are theirs alone and do not replace the need for your own medical expert advice at all times.
