Welcome to my first attempt at blogging I hope that readers find it useful.
My journey started when I was 24 and newly married, I developed excruciating hip pain which developed over the years and was routinely diagnosed as sciatica, lumbago, neck pain, whiplash etc. I had to give up many sports I enjoyed as the pain had a serious impact on my working and family life. Being a police officer I was able to keep reasonably active though in the end the disease ended my police career at the age of 45, this is when I finally got the diagnosis of Ankylosing Spondylitis. (AS)
In many ways the diagnosis was a relief as I was able to research the condition and come to terms with what was happening to my body. Over the next 20 years I trialled numerous medications, anti TNF treatments, Cox 2 inhibitors etc, sadly the AS had already done its worse causing my spine, from hips to skull, being firmly fused and badly misshapen. Most of these drugs were not helpful other than calming the pain and stiffness to some degree.
I mention the AS as eighteen months ago having moved to Norfolk I was diagnosed as having MGUS, I was told it was a condition that did not require treatment but could lead to Myeloma. Again I carried out quite bit of research to understand the condition and I was hopeful that the MGUS would stay fairly dormant for some years to come.
Sadly just before Christmas 2015, at my six monthly visit to see my brilliant haematologist at Kings Lynn hospital, I was told that my kidneys were showing signs of deterioration as a result she feared that MGUS had developed into Myeloma. Skeletal X-rays and bone marrow tests are completed in the days just after Christmas. On 11th January 2016 it was confirmed that I do have Myeloma and that a chemotherapy package, administered weekly, over the next six to eight months was the way forward, that is scheduled to start on 19th January 2016.
With my wonderful wife we are ploughing through the many excellent documents provided, linked ourselves to Myeloma UK who have sent loads more valuable information to allow us to better understand the prognosis.
I have linked the three conditions in my blog as there does appear to be some research being carried out, mainly in America, that AS and Myeloma could be linked. Both are autoimmune conditions and I cannot help but wonder what effect the twenty years of taking drugs that lowered my immune system further might have had in my now developing Myeloma. I wonder if there are others out there similarly concerned, especially the long term effect on taking the potent anti TNF medication.
Hopefully, over the coming months I will be able to share my experiences and progress with others.
I am already on a short course of steroid treatment to prepare me for the 19th January. It says on the packet may cause insomnia. That is something of an understatement as last night I managed just two short naps of 20 or so minutes as my mind was so very active.
Thank goodness for Sky TV and repeats of cricket and football through the night. At least the medication is just for four days and it is strange, in spite of my lack of sleep I do not feel tired at all,we have even managed a walk in the winter sunshine today.
