At the end of 2016, I was changing insurance companies and the new company sent me for blood tests. When the results came back, they immediately said: “we are not going to cover you, your CK levels are too high”. What the heck are CK levels, I wondered?
I went off to the GP who sent me to a neurologist to see what is going on. By this time, I had googled CK and found that it is related to muscle deterioration. “Don’t jump to conclusions,” said my GP.
I went to a neurologist in Perth only to be told, “lots of women your age can’t get up off the floor, lots of people have high CK levels, I don’t think there is anything wrong with you”. I was only 55 at the time. I was then told I would have to come back for more testing. So I went back to Perth for an electromyography (EMG) test. That’s where they put electrodes on you and send an electric current through your muscles. I was then told I have to have a muscle biopsy – and that I have a chronic disease and the biopsy has to be done ASAP! They even rang another neurologist to see if I could get an appointment. This is the person who said there was nothing wrong with me… he had changed his tune a bit by that point.
I went back to Perth for the third time for the muscle biopsy before an 8-week wait for the results. Back to Perth again where it was confirmed that I had sporadic inclusion body myositis (sIBM). This explained why I felt like I was walking through syrup – I had thought it was just because I was unfit. And another side effect, my swallowing. For months, I had been having difficulty swallowing food. This is called dysphagia.
When I went back for my results, I was put on a trial for my dysphagia. It entailed blowing into a device daily for 10 weeks, to try and make the throat muscles stronger. Unfortunately, this was not much of a success. At the beginning and end of the trial, I had to have a camera placed down my throat and also X-rays to measure the differences. To date, I am still waiting on the official results. That was 12-months ago.
My disease, sIBM, is a muscle wasting disease that usually affects people over the age of 50. Usually males and it’s usually a slow progression. And it’s RARE. About 50 people per million in America have been diagnosed, much less people here in Australia.While other forms of myositis are around (polymyositis and dermomyositis), they are more well known, but also rare.
I am the only one in my town with sIBM. The first indicator of my disease was elevated ALT levels a couple of years before my CK levels were noticed. I was also feeling sluggishness in my muscles. No doctor ever looked into it any further at the time. My legs and arms feel as though they are getting weaker. There is no cure for this disease and no treatment! So I am at the mercy of my body. I stumble when I walk, I cannot go up stairs without holding onto a rail to pull myself up. I cannot walk up slopes without difficulty. I cannot get up off the floor without great difficulty. Fatigue is also a major issue. I fall asleep in the afternoons as my body tries to recover from the morning’s activities. My sleep patterns are all over the place.
The only thing that is recommended is exercise to try and build muscle to replace the muscle that is being destroyed. But we are not allowed to over do it either as that defeats the purpose. I go to a heated pool twice a week for aerobic classes (in the water), and I do pilates classes twice a week also. These classes are mostly late afternoon, which means I can rest and go to bed when I finish them. While I was trying prednisolone for a short time, it is actually counter-active for my muscles although it has given me some relief from the dysphagia. But I still need water beside me at mealtimes because some food still doesn’t want to go down and choking is very unpleasant.
In five to 10 years from diagnosis, I am expected to be in a wheelchair. And eventually, I will not be able to move myself and will have to rely on lifting equipment to get me in and out of the bed, onto the toilet and into my wheelchair. I will also probably end up being tube fed due to the dysphagia, that is, if I don’t die from aspiration pneumonia. My poor husband didn’t sign up for this!
At the moment, I don’t look sick and have to put up with people looking at me and asking themselves if they believe I have anything wrong with me. I am using a hiking pole for balance when I am out, so I don’t stumble and fall. I have a disability sticker for parking, which I use when I really need it and put up with looks from people who think there is nothing wrong with me. And fatigue prevents me from working, as does the brain fog.
I attend a monthly meeting at Open Minds, which is run through the WA Neurological Society. But again, I am the only one with sIBM and feel out of place surrounded by people with other more visible diseases. So it is one day at a time. I see my neurologist twice a year, but after the initial excitement of discovering another sIBM patient, I feel like just another number. I no longer work as I can’t lift things, my brain has trouble thinking (brain fog), and I can’t get through the day without a sleep. Trials for drugs to slow the progression of sIBM are taking place in USA but here in Australia, we seem to be behind the times. They say funding is the problem.
Please check the Rare Disease page(s) for related Support Organisation(s)
Sporadic Inclusion Body Myositis