Hi,
I’m currently on the very long UK waiting list for neurology. I’ve been on it for a little over a year now.
A little background, I’ve had bad fatigue (I hate this word I prefer crushing exhaustion.) since 2011, but only got diagnosed with chronic fatigue in 2019. After I struggled to hold down a job because I was so tired.
I have a whole list of other symptoms that I’ll put below. But recently thinking back I had what I think might be Lhermitte's for 3 years.
It started whilst I was playing tennis at school at 16 right before my final exams. I turned my head to the right and it felt like I had been struck by lighting, from the center point of my neck this shock went up into my head and all the way down my spine into my left leg. It was so sharp and quick I just collapsed.
After being taken to the A&E they said that I was just stressed and that it was nothing to worry about.
But it continued on and off for the next 3 years quite frequently. At first it was just as shocking and I would collapse every time, and then slowly over time I would do it and be like urgh not again that felt horrible, and then eventually it got better and now I might have it once in a while. Around the same time I got a boyfriend and I vividly remember sitting on his kitchen counter as we ran ice over my feet and legs because they felt like they were on fire. This has happened on and off as well over the years.
I have to add that I had childhood epilepsy and a mum who made too much of a fuss of me which made me uncomfortable as I didn’t enjoy being made out to be a spectacle. So I’m really bad at asking for help and hide symptoms a lot. But now that I’m older and trying to figure out why I feel so rubbish I realised it maybe connected.
So I guess my question is, is can you have Lhermitte's by turning your head instead of looking down?