My amazing journey

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I’ve been on one amazing journey of self-discovery, but with a disastrous catalyst after suffering from a near fatal rhabdomyolysis injury in my work as a hospital porter for the “Northern Health Social Care Trust” after being given some strenuous anaerobic work to shift around 50 creates of old x-rays away back in October 2013.

I spent nearly two weeks in hospital after my creatine kinase went off the scale and it took around 5 days to reach the 200,000 mark, the first week my heart was all over the place and I spent a week connected up to a heart monitor in the cardiac ward before being moved to the general medicine ward and during this time I was receiving continuous IV therapy to keep my kidneys flushed and protected from the myoglobinuria.

During my time in hospital the consultant told me that the work that I was doing was not compatible with my condition of McArdle’s disease and that I should relay this information to my employer which I did through the occupational health department I’m still doing the work today that I was doing back in 2013 the advice I was given was to work within my limits which is basically erroneous and ambiguous advice as my muscles seem to work without pain and stiffness until it is too late, not only is it vague advice in my case I believe it to be dangerous advice as I seem to suffer rhabdo before suffering pain and stiffness, this has always been my case. The whole time I was in hospital I had no muscle pain on stiffness my muscles felt fine even though they were suffering.

While I was in hospital I started a journey of researching information around muscles and creatine kinase and muscle injury and found out that grapes help to reduce CK so I asked my wife to get me some grapes and as soon as I started to take them my CK fell dramatically by over 100,000 in 24 hours which amazed the doctors.

The 2 weeks that I spent in the Mater hospital were the worst 2 weeks of my life something that I don’t want to experience again even though I’ve suffered from myoglobinuria from around the age of 18 and managed it myself. I wasn’t diagnosed until I was 31 years of age my GP just could not get to the bottom of my myoglobinuria until he tippled onto my elevated CK during a routine blood test which he sent me to the hospital to have investigated and this lead to my eventual diagnosis after about 6 months of further tests and a muscle biopsy.

…….to be continued

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An introduction to McArdle’s disease

Dr Ros Quinlivan talks about the symptoms, diagnosis and management of the very rare muscle disorder McArdle Disease (also known as myophosphorylase deficiency or Glycogen Storage Disease Type 5). Filmed in 2010 by CLIMB (Children Living with Inherited Metabolic Disease), as part of a series funded by the UK Department of Health. The production and sound quality is poor, but the information is good.
Our thanks to CLIMB and to Dr Ros Quinlivan, who leads the UK McArdle Clinic at the National Hospital for Neurology and Neurosurgery, Queen Square, London WC1.

Posted in cycling, McArdle's disease, pain, Uncategorized, walking, work | Tagged , , , , , | Leave a comment