I have been a regular attender at the Isle of Wight music festival since 2008. At the event in 2012 I had my right foot stamped on (accidentally). Over the following days my big toe went black under the nail and over the course of the next couple of months I was getting recurrent infections in and around the toe. It was during this time that I started noticing that I was getting strange sensations generally around my right foot, although primarily centred around the heel. It was assumed at the time that this was a spread of the infection and a further course of antibiotics should deal with it. That seemed to be the case as the infections went away. However, I then started to notice that I had a certain lack of feeling in my right foot. At first I noticed that, if I walked on the tiled floor of our kitchen, it would feel cold in my left foot, but not in my right. After a couple of months, I took a bath (a rare occurrence as I prefer to shower). Having run the water and tested the temperature with my hand, I put my right foot in. Thinking the temperature was ok, I put my left foot in, only to discover that it was unbearably hot, and sure enough my right foot was going red. Thankfully I got out before burning it. It then transpired that, far from not being able to sense temperature in my foot, it was actually the same all the way up my right leg.
By early 2013 I was starting to experience electric shock type feeling in my leg, and would become increasingly restless when sat for any length of time. I was sent for an MRI scan of the spine and it was found that I had swollen lumbar disks, which may have been affecting the nerves in my legs – described as a form of peripheral neuropathy. I was sent to physiotherapy and prescribed amitriptyline to ease the discomfort. I continued like this until the latter part of 2015 when the discomfort became noticeably worse, and I also started to become increasingly wobbly on my feet when standing up from a seated position. I then began to notice that I was stumbling occasionally – I couldn’t get to a fast walking pace, let alone run, without tripping over my own feet.
Around the same time I was increasingly suffering from disturbed nights (although I’ve never been a good sleeper), a general feeling of fatigue and lethargy, and getting head sweats for no apparent reason – I would cycle to work, and then having cooled down and got changed, my head would suddenly start sweating again, but also they would start at other odd times when I had not been exercising at all. The symptoms I was showing are in many ways consistent with low testosterone, and at my last testosterone level check in 2013, which was taken just before I was due an injection, it was found my testosterone level was very low. In January 2016 I discussed the various symptoms with my GP and a series of tests was organised including liver function, PSA, testosterone levels. I was also referred for a bone density scan as a possible diagnosis was osteoporosis. My PSA was normal, and a physical exam showed no signs of prostate problems. My testosterone level was normal, although I was still a few weeks away from my next injection being due. By this time my leg problems had worsened further. I was getting pain in my left knee and left hip, and I started to notice when driving that if I was holding the car on the clutch (in heavy traffic for example), my left leg would start to tremble, and so I was given a neurological assessment by the GP. As a consequence of that I was referred to the neurological department at University Hospital Southampton (where I work).