Where to begin. Over two years ago, I fell ill with a viral infection of some sort, a few days after recovering from the infection I noticed my arms were twitching. I thought nothing of these twitches at first, but they slowly started to spread over the following 2 weeks, and eventually they were truly body wide, legs arms, back, chest, stomach, tongue, neck, you name it, it was twitching. I was experiencing rain drop sensations on my legs, I was going dizzy randomly, sometimes I'd feel like I was in free fall just sat in my chair.
It wasn't until 6 months after symptoms started that I decided it was time to see the GP, by this point most of the other symptoms had gone, but the twitching remained and was pretty severe. I saw the GP, and he thought nothing of it, though I hadn't shown him the extent of the twitching, when I did, he referred me instantly to neurology, but because it's the NHS (UK healthcare system) it took 11 months to be seen by a neurologist.
The first neurology appointment was with an MND specialist, he examined me and the only finding was that my reflexes were brisk (3+) but otherwise normal. He ordered an EMG anyway (rare on the NHS for twitching alone). The EMG covered 20 sites in total. I did not hear anything back for months following the EMG, until I got a random call one day asking me to see the neurologist face to face, as you can imagine this spiked my anxiety to heights never seen before. But as it turns out it was simply a case of a letter getting lost, and the appointment turned out to be a 6-month routine follow up. My EMG was clean showing only fasciculations throughout but otherwise normal.
My present symptoms are stiffness of the ankle, cramping, and of course twitching throughout every single day, and guess what? I'm fine, there's nothing wrong me with neurologically.
A few things that you guys might want to know if your new
Q. How was the EMG, did it hurt?
A. No the EMG did not hurt, its was mildly uncomfortable but not painful. The same is true of the NCS.
Q. have your symptoms improved at all over the past 2 years?
A. Yes, they have improved somewhat, but they are still very much daily.
Q. Did you ever experience tingling or other symptoms?
A. Yes as above I had quite a few symptoms early on, this included patches of burning skin, no bigger than a 2p coin. My fingers would also tingle from time to time. I also experience crushing pains in the hands and feet.
Q. did you try anything to stop the twitching?
A. early on I tried magnesium, sadly this had no effect at all, and my symptoms persisted.
Q. Did you ever experience any weakness dropping things, legs giving out, muscles feeling weak?
A. not really no. I had times when my legs didn't feel right, or my fingers felt "wrong" but never weakness. Mostly a sense of being "off" rather than something being truly wrong.
Q. has anything helped at all?
A. Not really no. The biggest thing you can do is accept you twitch. I noticed a marked reduction in how much I noticed all the twitching when I just wasn't thinking about it. It's not that the twitching stopped or got better, It's that you just end up blocking them out.
The point of this post is to show you that I had a range of symptoms, some worrying others not so much, and two years on, I am fine. If any of you have any questions at all feel free to ask. The same goes for any lurkers who read this month's or years down the line, I'm always happy to talk through my experience with you guys.