I'm new! Here's my FND story:
I had my first symptoms 10 years ago; just 2 symptoms (numb left foot & numbness in left side of face). I thought I had MS and so did my GP. I saw my GP, a Neurologist, had blood tests, MRI scans & electrode tests. All came back OK & I was told there was "nothing to report", discharged from the Neurologist & told to "just keep an eye on it"! I only had 2 symptoms, and only occasionally. In time, they stopped, & I was able to put it to the back of my mind.
Fast forward 8 years: the numb face happened again and the numb left foot, but this time the leg joined in too! Gradually, more & more symptoms started, until I could experience numbness &/or tingling anywhere (it may be just one limb, or my face, my mouth & tongue, or everywhere). Also aches, pain, tremors/spasms/twitches, balance issues (I often stagger/stumble - no, I'm not drunk!), I stumble over words when I talk, have brain fog, my leg sometimes gives way so that I suddenly curtsey (!), bladder problems, fatigue.... Then there are the really bizarre sensations, like suddenly feeling as though I've been stung by a bee, when there's no bee at all and no sting mark! Or the feeling of water trickling down the front of my leg (no water there!) It's bonkers!! I started keeping a record of which symptoms I had and when, & realised that I have something every single day. The number of symptoms, frequency and intensity of symptoms varies from day-to-day, hour-to-hour....
I have seen my GP regularly (very supportive), and a Neurologist only once (??!) I had MRI scans, and my FND diagnosis was sent to me in a letter last Christmas holidays! No telling me in person, just sent a letter, saying this is what you have, go away & look at these websites! Thanks!
Having read lots of people's stories & blogs on here, websites, etc., I realise that I am very lucky - my symptoms, though frequent (daily) and annoying, are (generally) manageable, & I'm able to carry on reasonably normally (I just have to pace myself more, slow down a bit more, & sometimes give in to the pain or tiredness). I am also so lucky to have a wonderfully supportive husband, son (who thinks it's funny that Mum's brain doesn't work properly - which 13-year-old wouldn't think that!!), friends and colleagues. I realise not everyone is that fortunate. That said, I do sometimes worry about the future - what if one day I wake up and can't walk, like I've read so many others go through. It's that unpredictability that gets me - it's all so random. I talked to my GP about the chances of it getting progressively worse, like MS can; he said it is "randomly progressive".
I'm trying to be sensible (sometimes!) & I find yoga good - it's relaxing and I can actually balance when I'm doing yoga, sometimes even on one leg when I'm "in the yoga zone"! But then, after doing that, try & walk normally & I'll bump into a doorframe or something! All good fun!
Well, thanks for listening/reading. I hope you're all coping ok(ish) at the moment, and I look forward to hearing from you. Hang on in there.