Hi I’m Iwan, co-founder of Myelopathy.org. Since being diagnosed with myelopathy in 2014, I’ve had many conversations regarding this condition. But one phrase, in particular, pops up in the Support Group regularly and I’ve also heard it mentioned in the Virtual Coffee Breaks and that is: “I was beginning to think it was all in my head.” Probably the majority of you reading this will agree at some point during your early onset of symptoms these thoughts entered your mind regularly. 

Looking back, and knowing what I know now, my symptoms made an appearance when I was in my 30s. I just put it down to my active lifestyle as it was mostly muscle-related aches and pain. I was repeatedly told this, so why should I have thought it was something a lot more serious? So, I carried on not knowing I was making things a lot worse. Yep and I did the usual thing – told myself to man up and get on with it. 

By the time I was in my 40s, the muscle aches became more frequent and it took me longer to shake them off. I constantly smelt of Tiger Balm or Deep Heat instead of my usual antiperspirant. I just thought it was part of getting older. I was no spring chicken anymore.

The journey from symptoms to diagnosis for most people can be a long road.

And when the symptoms move on from the muscle ache stage, they can be very subtle to start with. I can remember the first time I noticed muscle twitches in my arm. I put it down to the amount of coffee that I was drinking while at work. They weren’t painful and mostly just annoying. So for me there weren’t any red flags to think it was anything too serious.

Oftentimes when something is out of the ordinary, your senses pick it up and your brain tends to put it at the forefront of your mind. But after a while, when the brain doesn’t see it as a threat or danger, it slowly fades into the background and you forget about it even though it’s still there. It’s similar to walking into a cafe for the first time. Your senses are met with the fresh smell of coffee and food cooking. If you worked in that environment regularly, then these smells would slowly fade away and you wouldn’t notice them anymore even though they were still there. I found my brain did the same thing with my myelopathy symptoms. It would alert me when a new symptom appeared. But after a while, my brain would perceive it as a regular occurrence. It would see it as being normal, and not perceive it as a danger and remove it from the forefront of my senses.

Having these subtle and sparse symptoms make the whole diagnosis process even harder. Also the severity of the symptoms differs day to day. I think it happens to all of us at some point – noticing a severe new muscle twitch or symptom. For me, for example, it regularly feels like someone is slapping me on my shoulder blade. I would make an appointment to see the doctor and during the appointment, the symptom is more sporadic and not so severe. I would tell the doctor: well it was there! This could be one of the many reasons why myelopathy is difficult to diagnose early. When you keep visiting the doctor and hospitals overtime and they don’t give you any answers, this could lead you to think: was it all in my head?