“Where there’s life, there’s hope” – Living With An Undiagnosed Neurological Disorder


Note: Since this article was written, symptoms have worsened, information unearthed, and a diagnosis provided. I have classic FND (Functional Neurological Disorder).

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I recently rewatched The Theory of Everything, and as someone currently struggling with an undiagnosed neurological disorder and seeing the struggles Stephen Hawking went through with Motor Neurone Disease… It hurt to watch.

I don’t have Motor Neurone Disease (MND), but I have similar struggles. The film reminded me of how much I’m struggling. I first raised issues I was having in 2007. I was ignored, gaslighted, and left to rot. My initial issues were chronic headaches, migraines, and fatigue; along with depression and anxiety.

Now, I suffer from the above, incorrect motor signals, and issues drinking, eating, and breathing. Right now, my main issues are drop attacks and coordination issues.

In the film, you may have seen Stephen’s right foot turning inward and his pinky finger having to support his hand while he writes, these are things I have issues with. Depending on how bad my symptoms are one day, one or both of my feet can end up pointing inwards. I can no longer write without being in pain due to my pinky and ring finger having to support my hand.

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On top of these, I also deal with an intense bone pain that feels like a bone being peeled with a veg peeler. My skin has issues transmitting pain signals, so I won’t feel anything that should hurt me. I can put my hands in boiling water and feel nothing. But as soon as I lay down, or sit down, I feel a pressure pain. It hurts just for Harley, my cat, to sit on me.

I also have issues regulating my temperature. In 28-degree heat in the UK, I can be cold. And in 0-degree temperature, I’ve been known to be so warm I had to take my jacket off.

If I’m warm in warm weather, nothing cools me down. If I’m cold in cold weather, nothing warms me up. And to make it worse, if I overheat or get too cold, I have more drop attacks as if my body is fighting an infection.

Yesterday, in 29-degree heat in the UK, I had 32 attacks. Three drops, twenty partials, and nine absences.

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To put it into perspective, I typically have between 4 and 10 attacks per day – totalling between 28 and 70 a week. This week, on the other hand, I’ve had around 200; and I’m still waiting on a diagnosis or any help after sixteen years.

I hope I find out what is causing it, whether it be one diagnosis or multiple. I just need to know. Because I’m only getting worse.

But, while there is life, there is hope. So, here’s to hoping.



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