Mike Nelson, UK
Four years ago when I was just 37, the loss of height I had began noticing when I was 30, but which had much accelerated in the previous 12 months, meant I had shrunk by two inches something the doctors told me was "impossible" for someone my age. They told me it was my "imagination" that I had gone to 5 ft 6 inches from 5 feet 8 inches.
It wasn't imagination, it was osteoporosis. But the doctors didn't recognise it. It was only when I broke three ribs after walking into a door frame that it was suggested that the fractures, my height loss and painful joints might be caused by osteoporosis. It was at my suggestion that my GP finally contacted a specialist though it took almost a year for him to be convinced almost in desperation as nothing else would explain my problems and after all, osteoporosis did not affect men. I think the doctor was as surprised as I was when the DXA scan indicated osteoporosis.
As far as risk factors are concerned, I think the doctors should have recognized that height loss in a young man was not normal. And I had two years of chemotherapy for Hodgkins disease and five years of protease inhibitors, which might have had an effect.
Perhaps we should modify the risk factors reported to doctors and radiologists to include medical treatments including cytotoxic compounds and antiviral drugs. And doctors should be better informed and more receptive to considering osteoporosis as a problem in men at any age. The good thing is that I now have a reason for my unexplained problems.
The biggest embarrassment was that in order to get a bone density scan I had to attend a "well-woman" clinic and endure some rather hostile "get out of our women-only space" remarks from the other clients. This was not the first time, as I was also required to undertake a mammogram (an even more difficult and uncomfortable procedure on a man than a woman), since my caused a breast-enlarging lump to appear (which after a biopsy was found to be benign). All of which seemed to defy the myth that both osteoporosis and breast cancer are women-only problems and age-related issues.
I am campaigning locally for recognition of these problems for both younger and non-female patients and also to establish more general clinics besides the 'well woman" clinic. Given the intimidating atmosphere I think that many men in my situation would not have undergone the necessary examinations. I hope my story may help other people in 'non risk' categories to get a faster diagnosis.
I am relieved that my latest DXA scan shows marked improvement, following treatment with bisphosphonates and a high calcium and magnesium diet. I am now near the fracture threshold rather than well outside it.
The height loss continues and I still have painful joints from osteoarthritis, due in part to the late diagnosis of my osteoporosis. I take things more carefully now and use a stick when walking since I don't want to fall.
While I have not suffered any major fractures I still manage to break toes with monotonous regularity, but, perhaps fortunately, I also suffer from peripheral neuropathy so that after the initial pain I almost forget I've broken a bone.
Now I also see that osteoporosis can be hereditary my mother has osteopoenia.
But there is a further positive note. When I was originally referred to the "Well Woman Centre" I received a very frosty reception. Now the clinic recognises it has a more varied role and has become an independent osteoporosis and osteopathy centre with a much more open attitude. Could this be due to the increasing number of male patients?
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