My IBM story starts with my experiencing discomfort eating and problems with swallowing. The GP referred me to a consultant gastroenterologist which, with hindsight, was not the best option. After about three years of no progress, with a grim experience of an endoscopy that didn’t work and a steadily worsening condition with considerable weight loss, I asked my GP to refer me to ENT. They were better equipped to carry out some meaningful tests including throat muscle strength, pH tests and some barium swallow scans. I was also referred to a speech therapist and dietician.
The latter worked out a list of suitable foods and gave me a number of special supplements. My emergency take-anywhere meal was ground rice with jam, plus special supplement, eaten cold or hot. The first treatment was to dilate the throat muscle, this only helped for a day or so, then tried a Botox injection which only made my dysphagia very much worse. Last resort was surgery to remove a piece of the muscle. The surgeon insisted on ‘before & after’ videos of a barium swallow scan. My performance at the ‘before’ scan was so bad that the barium meal just bounced back out again, the radiologist’s comment was “that’s the worst case of dysphagia I have ever seen, at least I shan’t need much barium”. Interestingly the ‘after’ scan showed weakening of the muscle at the lower end of the oesophagus where it enters the stomach. This had been rather masked by the throat muscle weakness.
The op was successful and I was able to eat proper food again, albeit with care. I think that my first meal afterwards was the best I have ever had, even though it was soft and overcooked, especially as there was a patient in the bed opposite being tube fed through his nose. A sample of muscle was sent for biopsy which showed evidence of ‘Myositis’, a word that was to figure a lot in the years to come. I was referred to a rheumatologist but as there was no obvious signs of deterioration in any of my major muscles it was put down as Polymyositis to be monitored every six months. With hindsight I had noticed a loss in stability going down stairs as I found that I needed to hold on to the banisters, but I had put this down to arthritis, which was a common family condition.
Over the next couple of years, though, muscles started to weaken significantly in my fingers, arms, thighs and feet. I have always loved cycling so had to adapt my bike, firstly with an electric motor, then to an electric trike, then an electric recumbent trike. Lucky that I am a retired design engineer. The rheumatologist referred me for an EMG which showed muscle changes that he described as ‘consistent with Inclusion Body Myositis’. This was my introduction to IBM and “no it’s nothing to do with computers”. The IBM diagnosis was confirmed by muscle biopsy taken from my ‘best’ thigh. To me it seemed a shame to spoil a sick muscle by carving a piece out of it – ouch!
About this time I went to see my GP regarding changes in bowel habit, bowel cancer was much in the news at the time and a number of friends of my age were having treatment. The routine tests showed no nasties apart from normal ‘wear & tear’ which I suppose was reassuring, however I was having toileting difficulties that I felt needed investigation. Remembering that the barium scan had highlighted the possibility of my lower oesophageal sphincter muscle being affected by the IBM, I wondered whether this also could affect my lower abdominal and pelvic floor muscles. I asked the rheumatologist who said that there were records of such cases. Sure enough tests did confirm significant muscle weakening in this area. The only effective way to control this at the moment is by careful choice of diet. Combined with the physical difficulties with using the bathroom this is for me the hardest aspect of IBM to cope with.
I find that IBM is a very lonely disease. It is not treatable using conventional medicine so once I had been seen by the specialists, apart from an annual progress check up by a specialist physiotherapist, I was pretty much left to fend for myself. I don’t get ongoing help from Social Services, although they have provided me with some basic aids around the house and a manual wheelchair. I have managed to adapt my home in order to carry on living there; we have lived here for well over thirty years and do not want to move. Although I did have adaptations made to my car with hand controls and a wheelchair hoist I have now given up driving and replaced the car with a Wheelchair Accessible Vehicle that allows me to be chauffeured by my wife and ride in my wheelchair in the back.
It is distressing psychologically to be aware of the gradual loss of one’s faculties and frustrating to be unable to do much about this. I have discovered a number of UK charitable organisations that are of help, including Muscular Dystrophy UK and Myositis UK, but for day to day support I have found The Myositis Friends Support Network to be of great help with coping as well as learning from the experiences of others in a similar situation.
Chris, November 2018