Bizarre & Random Symptoms - my FND Story - FND Action

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Bizarre & Random Symptoms - my FND Story

FNDfun
FNDfun
4 Replies

Hi All,

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.

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Maeve31

Hi FNDfun,

You're very brave and your sense of humour is invaluable - good on you

We've been to 2 neurologists, a psychiatrist and a psychologist and have been told then generally what you first present with should be the extent of your symptoms. So don't expect it to progress into anything more

It's a horrendous diagnosis and I'm horrified at how you were informed. That was just so the opposite to how Dr Jon Stone's says a patient should be told.

Stay strong and funny

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FNDfun
FNDfun
in reply to Maeve31

Hi Maeve31,

Thank you so much for replying, and especially for that encouragement about it not being likely to progress into anything more. That is so reassuring; thank you! I've got used to randomly curtseying in front of people (I'm practising in case the Queen ever invites me round!) and being "stung" by invisible bees, so if that carries on the same, I'm ready for it!!

How are you? Sounds like you've had quite a journey, having to see 2 neurologists, a psychiatrist & a psychologist. I hope you're managing and hope today is a good day for you.

Take care. Sending best wishes.

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the7thchakra

Thanks for sharing! I think the overlap of symptoms across is fascinating.

I have or had many of the same symptoms; the "bee sting" and "water trickling down the front of my leg" symptoms you describe are especially interesting to me.

I started getting the "bee sting" sensation about 3 months ago. Previously, I had pins-and-needles tingling in my legs (below the knees), but after getting nerve ablation, that feeling stopped. I was surprised, but even more surprised that the "bee sting" sensation started up in its place. I'd honestly take the pins-and-needles back, but I don't have much choice in the matter.

The "water trickling down the front of my leg" symptom is curious. I started getting that in 2016. I thought it might have been the result of using THC, but, once again, the sensation stopped after the nerve ablation. I still take THC and no longer get that sensation.

I did get a neurologist's work up on the pins-and-needles, and he has reported that I have some sort of "peripheral neuropathic process" at work. I have a follow-up in November, and I guess I'll see what additional details he can offer.

Do you have any changes to the sensations in your legs when you change posture or sit on seats that aren't ideal for you? I get all sorts of problems (weird sensations and weakness in my quadriceps) when I sit on certain chairs or in certain positions. Anyway, I was curious if you notice anything like that.

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FNDfun
FNDfun
in reply to the7thchakra

Hi! Thanks for your reply.

I'm sorry to hear that you experience some of these random & weird symptoms too (although it is reassuring that I'm not alone!) The "bee stings" are so bizarre aren't they, and incredibly uncomfortable. Mine are usually individual "stings" - often on my legs or arms, although they can happen on any part of my body (the ones in the eyeballs are particularly unpleasant!) However, I also had a "mega sting session" all over my head once as if it was a whole swarm of bees attacking me. Not nice! That's interesting that your pins & needles have been replaced by the bee stings. How long ago did you have the nerve ablation? It's great that that seemed to stop the pins & needles for you. Have you had any numbness since having it done?

It's interesting that you also had the "trickling water" sensation too, and that that also went after the nerve ablation. I'm glad that that has helped you with some of the symptoms.

You asked if changes in posture or seats affect the sensations I feel in my legs - I have never noticed any relationship between position and symptoms/sensations. It all just seems totally random! The only thing I have noticed about sitting down is that that is when my tremors/spasms/twitches seem worse - I would love to sit still and calm like I used to, but I often end up jigging around in my seat as my lower back spasms/jerks. It's so embarrassing if we're out somewhere. If I focus really hard solely on how I am sitting, I can sometimes control it to a certain extent, but if I try to talk or concentrate on something else, the chances are I'll start shaking. I've spilled many a cuppa! Oh the joys!!

I'm pleased to hear that you have a follow-up neurologist appointment in a few weeks - I hope that proves useful.

Hope you're managing OK, and hope today is a good day.

Take care.

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