Diagnosed with FND in April/May last year. Symptoms started in January 2022. Symptoms for me include motor tics, limb weakness, dystonia. A few weeks ago my right foot has been trying inwards nearly 90° sometimes with this issue causing my whole leg to turn in. I've had other mobility problems with constant inability for my R leg to hold my weight resulting in the use of crutches for 2 months last year. At this time I am also experiencing a lot of motor tics affecting my arms and my neck. For the past few weeks I've been managing with the use of crutches and when needed using wheelchairs that's available in shops. I have a few questions for those with FND where it primarily affects mobility;
1)When was the time that you considered buying a wheelchair to help with day to day life?
2)What were the considerations taken with the type and accessories on the wheelchair?
3)Living in the UK, is it worth talking to the GP about a referral to the wheelchair service or just buying a chair with my own money?
4)What support is out there to aid in the process of getting a wheelchair?
I would appreciate any support/advice given.
Update: after a few physio sessions done privately, this issue has been resolved and now I can walk normally. The questions above still stand in terms of management of FND flare ups in the future with tics and fatigue or other mobility problems
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Ive had FND that affects my mobility since 2014, so I’ll try help where I can ..
Foot drop is where it all began with left leg weakness ..limping etc … well ‘access to movement’ is the real issue…
The main thing I tried to do was to think about my life style and what are the things I’d stopped doing that I missed? then I looked at the aids available, that may enable you to do them, ok all be it in a different way …
For me, it was days out at the gardens with my partner etc and being able to take a flight away to flop on a beach! Or just a train …
But, here is a link to the Red Cross below as they hire wheelchairs, depends where you are in the U.K.
The website also explains who can access ‘free’ wheelchairs etc, so it maybe helpful.
I didn’t think to ask my GP but why not eh
I struggled with a walking stick only for many years, then when I finally ‘managed’ a flight I booked assistance…. oh the utter relief of a wheelchair, as airports are huge! plus after sitting that long, even a few hours on the plane, I can’t move at all really …
When I got back home, I bought a rollator with a seat, that turns into a ‘day’ wheelchair, it’s not one for full time use, but handy to have a seat as needed…. when out and my partner pushed me at times in the wheelchair, when I couldn’t take another step!
We took it to Spain with us too, for my 50th birthday holiday… it really helped me to do more.
I’m lucky in that I’ve slowly improved in some ways by pacing ! some Neuro physio and lots more.. but, I’m about to buy a mobility scooter for days out etc, so I can explore more.
I’ve hired them on days out at national trust gardens, Eden project etc just gives you such freedom to just enjoy your day more
As the sheer frustration, of not being able to is tough, as I’m sure many on here know all too well! then if I push it too much, the pain and relapse is awful….
I’m not advertising this brand below, as there are many… but this is the one I got for my days out - it’s only good on tarmac, not uneven muddy surfaces…
Personally, I’d try to go your nearest largest mobility store nearby, chat to the staff and try out different ones, to suit your needs .. then you can get a second hand one maybe
I wish I’d taken the steps to get the right mobility aids sooner at different stages along the way, so please try not to don’t leave it too long, they enhance your life as and when you need them
Life’s for living right, especially through tough times, like many here are experiencing too
great response by Brighton. I’ll just add that I bring crutches and a wheelchair in the car. That way, if I’m really bad, my husband will get the wheelchair for me. If it is a day where I can make it through using the crutches, I will. Having the mobility aids changed my life. I used to not go anywhere, because I knew I could get in someplace, but not make it back to the car on my own. Now, even when it’s really bad, I at least know that I can make it back to the car by myself with the wheelchair. When it’s a place with a lot of walking, we just do the wheelchair and don’t risk it with the crutches. You can even try to walk pushing the wheelchair and then sit down and use it when your symptoms kick in.
I got through mine through the doctors office and insurance covered it. I think they are absolutely the cheapest products available, so if you could upgrade, it may not be a bad idea to do it on your own.
Embrace the mobility aids. They will only help you to do more! Good luck.
Hello my friend,
To start, I am so sorry you are, like all of us, struggling with FND. The disorder manefisting in ways even Doctors don't know what to do.
This said, I won't lie, my FND dignosis was a mistake. I do not have that. What I do half those, is horrid motor problems.
I am commenting based on, yes I was misdiagnoised, but to share my knowlege and help with another person plagued by this disorder.
One more thing I will add, after this reply. Feel free to check out my profile, message me, keep posting, whatever it is you need. I am not trying to "build" my follower count, I mention my posts as I try to communicate all of what I have been going through in this processes. Having spoken with people on here, other pages, and studying Neuro science to help get treatment.
One day, Aug 1st, 2021... I woke up one morning and couldn't move half of my body. Due to this and the misdigosis, I lost everything. My career, the ability to eat every day, slept on the floor. A number of things, nobody should have have to go through in life.
Things I did to help me? Honestly, none early on. I didn't use a cane out of shame. I did't get mental health because of the PTSD I have with Doctors misdiagnosing me (sadly, this is not the first time that has happened. I lost a kidney due to the same problem.} This said, don't be like me. Let your pride down. Get a walking stick/cane, I have 2 walking sticks. They make me feel more comfortable, and while yes, they may look out of place. So does a mid 20's young man having all the symptoms you have. Your leg turning towards your other leg. I also, cannot use my right hand.
Now, this all said... I said I was misdiagnosed. This is 100% true. I have generalized dystonia. That in less than 2 years.... If I do not take my medication and use a cane. I cannot walk/cannot walk without pure exhaustion and pain. From what you are explaining, to me... I am not a Dr nor hold any license to say I do. So please take what I am about to say... As my life experiences and unoffical studies, I implore you to continue to work alongside your Doctors.
The way you are saying you walk, that is a dystonic walk. Dystonia, is a big umbrella word for: Irregular muscle moves and contractions. The beauty and curse of Dystonia... It can be a symptom OR a Diagnosis. As a Dagnosis... There are verious ways of it happening. From phyiscal trauma, generatic mutation, to stress, to ideopathic ways. So in short, ways Doctors can absolutely see allllllllll the way to no idea how you go it, you just got it. Don't let what I said bring you down. Does it have it's issues? Yes. Do I live a normal life? In my eyes, yes! In other people's eyes not affected by neuro dystonia.... Then probably not. This said, I try not to let it, let me down. I have had to learn to pace myself. Go from, cleaning my entire place 3 times a week, all at once. I do 1 or 2 chores a day. I limit how much I study. Because critical thinking also drains my "battery." for the day. So I must pace myself.
The questions you are asking.. I can't say I have tried a wheelchair. I'd be lying if I said I did. I can't say I haven't thought of it. Espeically the past month. But, I don't mind taking my meds and using my cane. I live alone, so it makes it difficult to use a wheelchair everything. But, that doesn't mean you shouldn't use it. If your internal "battery" drains like mine does with, I assume Unilateral motor loss and weakness.. Then I strongly advise, getting a wheelchair and using it.
In terms of how to aquire one. The only moving chair I have considered what more of a scooter t ype chair? Nothing like the motor powered, for lack of a better term, wheel chair. I would be lying if I said I know how to get one. Your Doctor is probably a good start. Also you getting on here and asking the questions, you are doing exactly what you should be doing. Being proactive, thinking long term, and to me, you are kicking ass my friend!
All this said, really thinking on your post by the end of this, I am sorry I haven't been much help into your questions. I hope though, my experience and very brief explanation on how I have gone about getting treatment. Being able to, at least I hope... To empathize in all the ways I can. Your symptoms, in my perception, are like mine. Knowing I have a dystonic walk and proof of it, by my gene mutating, there is evidence for my dystonia. I hope the way I have broken down my process is tangible and helpful for you, at least in some way.
If you have any questions, feel free to post them and/or message me. This community, as I say to all newcomers, is an incredible community. We work together, run ideas past each other, and do whatever we can to help. Collaberating our information to help each other. Help each other acquire a quality of life we all yearn for.
With this said, my friend. Thank you for having the courage to ask and inform us all. I wish you the best, like everyone else.
just wanted to say hello to a fellow dystonia warrior!.....I have general dystonia and it comes from a cavernoma bleed in the basal ganglia area of the brain. I went from a scooter that closed up to fit in the car and progressed to a chair that is both electric and prescription to suit my needs. I got my chair through PIP on lease for 3 years and then I owned it outright so if you have PIP and the mobility component this may be a way to go. Like so many there is a huge question over the FND diagnosis for me and I am at the bit now where I no longer care. I had a conversation with my GP and asked him.....so you have a letter with the FND diagnosis so what are my symptoms as I don't have any symptoms that are not already fully explained and backed up with hard evidence from blood work and scans etc. The reply was ...you don't seem to have any symptoms at least there are non mentioned her!....so what is my care plan?....well if you have no symptoms there wouldn't be a care plan!....so lets just summarise here you as a senior GP Doctor are in receipt of a diagnosis with no foundation of any kind but that can severely affect my access to a good standard of healthcare. I was given assurances that it wouldn't affect me at GP service level and was advised to take it up with the Neurologist.
I also have FND. My symptoms started December 2021. My foot used to turn in just like you described. I also struggled with dystonia. All of my symptoms are much much better as a result of taking the course from FNDcourage.org Other people in the course have been able to stop using their wheelchairs. Hope this helps
First off, I'd like to say thank you. Glad to meet somebody else with it!
Your GP seems rather odd... I must say, the lack of his knowledge of Dystonia and can't seem to understand that a person can have multiple neuro problems.
My symptoms are pretty bad. My Dr also telling me that I don't have FND for sure. To the degree she is kind of worried I have generalized dystonia and PPMS. This due to my other symptoms and how much motor loss I have so quickly. Even the MS Doctors who said no to MS are now thinking I'm part of a group of people who develop symptoms before lesions. It's hard that even doctors of 40+ years of experience don't know.
My dystonia is from the KMT2B gene activating. Which that is difficult to understand at all. Adult onset generalized dystonia is very rare and not seen often. Even my neuro Dr with all her years of experience can't explain what happened.
I find mine quite easy because a bleed in the brain caused it in the basal ganglia area of the brain which is responsible for muscle movements, its like a stroke so I have got much improvement with huge amounts of therapy but its not going away and my life is adapted to suit this, at the end of the day life is what you make it and for some a label or diagnosis suits them for me am not so keen i know my brain has issues and i can deal with this but labels for me just makes things harder to work with and i know everyone is different and i don’t judge but for me this is as far as i can cope, FND doesn’t make the dinner but cognitive behaviour breaks things down enough that i can then make dinner is the best way to describe it for me
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