Leg Weakness and coming to terms

I just found out that my leg weakness is functional which I’m coming to terms with.

I herniated a disk a year ago, my right foot dropped and I stopped being able to lift the leg vertically. I had surgery, fixed it and the other foot dropped and I became unable to lift that one. So I shuffle along the floor like my feet are glued to it.

I can move my legs side to side and bend my knees. I just can’t flex my hips.

I also can’t move my feet but sometimes I get this cold breathless fluttering in my chest and I can suddenly move my feet…not 100% but maybe 80% but it doesn’t last. As soon as I move position it’s gone.Does anyone else experience any of this?

The neuro I saw was rubbish, he examined me, told me he felt it was functional, not why- only that the spinal mri was clear and it didn’t make organic sense or something. He then said there were no treatment places near me but he would try writing to a couple and that I should look after my mental health.

 I feel like a fraud even though I know I’m not faking it. Whenever I’m sitting I try lifting my legs but I just can’t. I’ve been using crutches but now I feel I shouldn’t. I’m so confused.

[Lucy-15]

Good morning if in the U.K.?

Firstly reading your post is so very similar to how my FND began back in 2014….

A procedure I had on my lower back did ease thr chronic daily pain I’d had for years, but seems to have ‘triggered’ Foot drop in my left foot and a limp as I was dragging that leg as I could lift my toes…. I struggled about with a walking stick and the stairs to my flat were a real challenge suddenly

A year later a neurologist thankfully referred me to Prof Mark Edwards now at the St.George’s hospital in Tooting London ( see Fndhope website for other FND specialists if you can’t get to London)

A week of incredible Neuro physio gave me an understanding of this scary condition, I found the theory part helps so much, but also I learnt techniques, that I still today rely on today to help my gait, nerve pain in my legs etc and manage the fatigue!

I’m not the sporty lady I was at 46 when this happened, but I no longer use a waking stick, unless on a day out or taking a busy train etc

I only use a mobility scooter on long days out to a garden maybe… as at some point, I loose control and my walking goes, shall we say …. it’s a long road back, but with the help from a ‘FND’ neuro physiotherapist ( not a usual physiotherapist) and lots of effort yourself to find what combination of things, helps you eg- pacing! Jacuzzi, moving ( walking) in a warm pool really helps my muscle spasms etc.

Acupuncture with my physio too I love. Very gentle Yoga, just restorative type classes, to calm the nervous system and my mind this helps me alot.

I started with a sports therapist one to one to help get the movemrnt back in my foot/ankle as well

It was the scariest thing to not be able to move a part of your body that’s for sure , so I really do feel for you

There is lots of lovely support on here, plus the FNDhope group have info aboit international support and where to get referred to for FND specialist

Hope this helps. Take care Lucy in Btighton.

[Hidden in reply to Lucy-15]

thank you, I’m actually in East Sussex too.

I’ve actually found that since my diagnosis on Thursday I’ve been starting to be able to move my legs while lying down.

Whilst I know it’s a good thing I’m finding it very overwhelming, it’s adding to the feeling of being a fraud and the fact that I can sometimes move them lying down but not standing is making me feel like I have no control.

[MONIREN]

You are not a fraud. Just because you saw a neurologist who didn't explain the why, I've seen 3, still nowhere. But I've gained so much from this forum. Mine developed slowly, I'm more fortunate than most. My brain forgets to move my leg, that's my best way to explain it. I try to focus on something else, it does help sometimes. A friend with Parkinsons showed me how he can stop his bad shakes by looking at his hand, just not possible all the time. Unfortunately with medical advice, you are on your own, but certainly not here. Please, there are many here who are more knowledgeable that have great suggestions. Take care. Moni

[Hidden in reply to MONIREN]

Thank you kindly, I can completely to relate to how you explain it ‘brain forgets to move your leg’.

I can send the instruction and feel it try but nothing happens. It’s so wierd!

I’m feeling a lot better after a few days. I think the attitude of the Neuros is just rubbish, it just leaves you leaving so small and awful like you’re wasting their time. I can’t understand why theirs not more research into something so prevalent.

Thank you for your kindness

[Paddoodlz]

I am sorry you are going thru this. I hate it when neurologists do this. You need to get an appointment with a neuro psychiatrist; I found one and had a full assessment and it was a game changer. They are highly specialized Neurologists....they are actually not psychiatrists but actually use specialized techniques from that field to diagnose and assess as it pertains to functional brain issues. If you can find one in your area that may be a good start. FND is NOT psychological...that's the first thing my neuro psychiatrist told me. I wish you well and keep us posted.

[Hidden in reply to Paddoodlz]

The Neurologist kindly told me there was nothing in my area…which is helpful. I’ll have to look privately and see what there is.

I wish there was more help out there for everyone.