Well the next couple of years were the real game changer. New symptoms made it clear that it was very different to what I had already been diagnosed with. From the age of 16 to 18 my skin started to change dramatically. It started with a thickening of my facial skin and the skin on my hands. Over about 6 to 9 months the joints in my wrists and hands began to swell, in a similar way to which my knees and ankles had. I was fairly oblivious to this happening; it was mainly my family that noticed. Unlike my knees and ankles, my hands and wrists have never caused me any pain, so I kind of just thought they had grown with the rest of my body and didn’t realise that they weren’t normal. The other changes over this period were much easier to recognise as they weren’t normal. The thickening of skin on my head had developed into folds on my scalp and forehead and sagging of the skin around my eyes and cheeks.
My doctors at the time were baffled, so this resulted in many more blood tests, this time there were some really horrible experiences. I think the worst tests were for a hyperactive thyroid. It started by drinking a sugar solution, YUM. Then over the next 4 hours my blood was taken every 20 minutes, not so fun. A prick every 20 minutes might have made me feel like a pin cushion but would have been preferable. Instead I had an intravenous needle on the inside of my elbow. Not helped by a shockingly bad placement by the nurse, this was an unbelievably painful experience, I can still remember the pain, from all 3 times I have the test. All of the tests were again showing no consistent results for any definite diagnosis, but they did rule a lot out, most importantly acromegaly.
By the summer of 2003 my doctors, my family and I were at our wits’ end, so my very kind rheumatologist recommended I see a former colleague who was a dermatologist he “really rated”. Off I trotted, to yet another new doctor but to my surprised I walked in the room and the doctor pretty much said, this is what you have. Ok, he might have given me the once over first but he knew the moment he saw me. I was about to be anointed UNIQUE. He diagnosed me with Pachydermoperiostosis; he had seen it before but not to the degree that I had it.
Over the 18 months to two years that we hunted down a diagnosis I tried to pretty much ignore my condition. I didn’t talk to anybody about it and tried to continue with my life as though nothing was happening. This was not because I didn’t thinking about it, I just couldn’t deal with it in reality, speaking about it would’ve made it a part of my life which I wasn’t ready for it to be. I guess I did suffer in silence but only because of my own stubbornness. I wasn’t in a happy place. I felt anger towards my parents at the time. They would research all the possibilities and get worried as to what the outcome would be. They didn’t share any of the information with me which definitely made me feel as though they were treating me ‘like a child’ a big no no for any teen. In reality I was acting like a child, ignoring my conditions and refusing to discuss them. They were also protecting me from some of the possible diagnoses which would of just lead to constant worry.