I had my stroke on 30th November 2021 & made some good early progress with physio. Then one day my affected leg suddenly felt very heavy like a lead weight had been attached to it & I was no longer able to lift it.
I spoke to my physio who felt it was an unusual stroke symptom. I felt like they didn’t believe me but when they tried lifting my leg they could feel the heaviness.
A few weeks later they mentioned that it might be FND. It was explained to mean in terms that a stroke causes problems with the hardware & FND is more a software issue. I was told to go away & look at the website www.neurosymptoms.org & let them know what I thought at my next visit. I left this session very upset & feeling like they thought I was making it all up.
I looked at the website but wasn’t convinced I had FND as it discussed lots of things like tremors, tics & seizures; none of which I have.
Following a subsequent visit to the stroke team they confirmed the FND diagnosis via a hoovers test & said that it was likely triggered by my stroke.
It’s taken me a long time to accept this diagnosis & the fact that I may never see any improvement in my leg & my walking. On the flip side it could also correct itself one day & I remain hopeful.
There has been no improvement for months despite all the physio & exercises I did/still do & has quite an impact on my mobility. In essence I have a leg that has a full range of movement if someone moves it for me but it doesn’t move on its own. It holds me up & enables me to move around (dragging my leg along) slowly but is useless other than that. If you lift my leg & let go it crashes to the floor as I have no control over it. I also have a foot that turns inwards & a type of footdrop. I have, what I call a happy & a sad foot
Compared to some though my symptoms are mild for which I am grateful.
It’s a condition that medical professionals understand little about & as a result people with FND often get fobbed off & any other symptoms they have get labelled as FND without further thought. It’s cost me a small fortune in shoes & socks as dragging my foot wears holes in them
Not really sure of the point of this post other than for awareness. If you’re still awake & have reached the end thank you for reading
Thank you for sharing your journey. I suffer from extreme tightness which limits my mobility and the Drs have mentioned post thalimic stroke pain, complex regional pain and post stroke parkinsonism. It looks like you experience the same nuero unknowns. I empathize with you on that. Keep up the good work and update if you feel like it. I would be interested in anything the medical professionals get correct, hopefully. Take care.
@Mbhope thank you. It’s frustrating isn’t it when we can’t get the answers we want & need. I’ll definitely keep you updated. Hope you get the progress you crave soon xx
Oh Ann. (Mrs 5k)Sorry to hear your story but hope your leg recovers on its own one day soon. My arm and leg don’t seem to improving now and I’m struggling with the physio regarding a splint or brace or anything to stop my foot turning over. I feel in the house last week which has dented my confidence. The physio is getting advice from a senior person at the hospital to see what he can suggest but it all takes so long. In the meantime I’m getting more and more frustrated.
@Mrs5K hopefully you’ll make improvements and your determination will pay off, it’s frustrating when the medical people fob off symptoms they don’t fully understand.
It’s good to share, others with similar symptoms will be able to relate.
@Apple how frustrating for you. Try not to let your fall dent your confidence. Easier said than done I know. I often stand on my toes or catch them on things as I can’t lift them. Thought i sliced them through the other day. Made me swear a bit really hope you can get some answers soon. Take care Ann xx
Thanks @Mahoney it’s so difficult when drs don’t understand. My GP said she’d never heard of it & did I mind if they parked it for now as I had other issues that needed sorting. I was ok with this at the time as I was waiting to see orthotics. I may need to revisit it now though.
I hope this update is posted in the correct thread. If not please let me know. I haven’t been around the Forum very much because of my increasingly overwhelming symptoms. It seems I now have Functional Neurological Disorder FND. I am relieved to find others here in a similar situation to mine.
@Bibs i have moved this post to this topic as I felt it might be more helpful for you as it already discusses FND. Like you I have FND. I don’t know how it affects you specifically but mine affects my left leg - functional limb weakness. I also get a lot of dizziness & fatigue & not sure if these are FND or stroke related or both (I suspect both). I’m currently waiting a face to face ENT appointment re dizziness & really hoping for some answers then.
Seems to me it’s another one of those seemingly medically specific terms that equates to “we don’t know”.
Its as specific as ‘cooking’ or ‘art’ - an umbrella for a thousand and one things.
I’m sorry that you all have symptoms of an unknown cause that’s labelled so generically that identifying treatment options requires deeper understanding -
When there aren’t causes the medical profession don’t know which path to take to prevent.
then it seems that often it lacks something to suggest coping strategies and compensating techniques.
You’re absolutely right @SimonInEdinburgh it is very much a we dont know so we’ll give you a label & leave you to get on with it. Well that’s my experience at least. Some areas do have access to much better care.
