During the 1990s I suffered from back pain and had several MRI scans which revealed problems in my lumbar spine. These problems were treated by caudal steroid epidurals to relieve the pain. They were effective for a short period of time and enabled me to continue to play golf. In the early 2000s I had increasing difficulty in walking round the golf course so gave up golf and took up bowls. While I didn’t experience any pain I became aware that something was not quite right so I had another MRI scan which revealed a problem in my spine which was increasingly affecting my mobility. In 2009 I had surgery to remove the lamina on four vertibrae of my cervical spine. This was very effective in relieving the stenosis in my spinal cord. Three days later I was able to walk normally out of the hospital. However, I knew that something was still not quite right and several months later I tripped and fell in London and broke my humerus. No reason for my fall was found but in 2011 I was referred to a specialist who carried out a nerve conductivity examination (EMG). I was then referred to a neurological consultant who was convinced that I had IBM. Indeed, he was so convinced that he did not carry out a muscle biopsy which is normal practice in suspected myositis cases. That was in April 2012 when I was 80 years old. I have no idea if my earlier spinal problems have any relationship to my IBM and neither has my consultant.
Since 2012 my condition has gradually worsened and I had to give up bowls three years ago. I am now only just able to walk with a stick or a walker. It won’t be long before I need a wheelchair. The only good thing about my journey with IBM is that I was 80 when I was diagnosed so had been retired for over 15 years during which time my wife and I had ticked off most of the items on our bucket list of things to do and places to visit before we died. I have found that MFSN is an invaluable resource to plan for the progression of this disease as there is so much experience and advice available. The thing to do is to anticipate your future needs and make the necessary adjustments to your bed, bathroom, chairs and other living arrangements before it is too late. This is something you can do more easily if you have the financial means. If you have to rely on the NHS and Social Services it is essential to ensure that your contacts understand the nature of the disease and its inevitable progression otherwise you will always be playing ” catchup”. Many medical professionals have never heard of IBM and I have found the Muscular Dystrophy UK alert cards a good way of conveying this information. I was able to ask MFSN members for information and advice as well as talking to the County Council Social Service occupational therapists so have been ahead of the game as my condition has deteriorated.