Does anyone have any experience of episodic spasticity in their legs? I've been diagnosed with FND but I'm not convinced as it was diagnosed after a ten minute phone conversation and a video I sent in of my gait. I've had an MRI of my head and cervical spine which were normal. However, the rest of my spine hasn't been scanned. I'd been having vague symptoms for years and it all came to a head last summer when I suddenly couldn't walk properly. My first attack lasted about three months and I gradually started to get better although I would still have minor episodes weekly, sometimes daily. My second attack/relapse came in November 2020 and it's still ongoing. I've had no help from the NHS. My diagnosis came in a letter with a website link. No follow up call or anything. I've sought private counselling to try and process what's going on and I'm also seeing a chiropractor which seems to be helping with my posture and overall energy levels. I'm also working on any positive health habits I can. I'm ok overall. I'm managing. I have two under fives so they keep me busy. With my gait problems and a host of other neurological symptoms, I can't help but be concerned that something is being overlooked but then if I express that concern it only seems to strengthen their diagnosis of FND as I seem hypochondriacal. Any suggestions of where to go from here?
Muscle spasticity and FND: Does anyone... - Functional Neurol...
Muscle spasticity and FND
HiI am sorry you are having problems receiving this information and I too would be feeling upset that your concerns are not being properly addressed. If you have a diagnosis of FND there is reluctance to approach medical professionals but there is specialist physiotherapy and occupational therapy available. I had gait problems too but got some brilliant advice from a specialist who talked about the attentive brain versus automatic brain. Apparently when i notice my legs going into my "curtsey" walk, instead of giving it attention and creating a situation where i am "telling" my brain to walk, so it tries . He advised stopping, swinging my hips side to side and then walking. My brain is then back to automatic.
I don't know if this will help at all, just know you are doing a great job with your little ones and hopefully you will get some more considered answers from the medic side soon. Become your own researcher and advocate if you can....
Take care, stay safe x
Thank you. I'm going to try the hip swinging!
Hi there gosh what an awful time you’ve been having. Sure many of us with FND unfortunately relate to your struggle to get any help ! And been sent off the the same website .....
I’ve had functional movement disorder causing gait issues for 6 years now, but am currently the best I’ve been and no longer use my waking stick 
If near London ask your GP to refer you to Prof Mark Edwards he has a FND unit at St George’s hospital in Tooting If in other parts of U.K. there is a list of other specialists on here somewhere. There can be a long wait but they are doing phone appointments at the moment. I’ve also had amazing Neuro Physio under him and have learnt several techniques to help me a lot, like LouBlou mentioned below.
Pacing!!! I know it’s dull but if you’ve not already tried this .... try to keep to similar number of steps a day ..... I still struggle with this .... but it really helps you do more eventually.
Anyway I help this maybe helpful and some of us do improve or learn to manage the condition over the years. There is light at the end of the tunnel ! Take care of yourself. Lucy in Brighton.
Thanks Lucy. I'm trying to learn pacing and I'm definitely getting there. It's a learning curve, isn't it!
Hi, I was diagnosed 5 years ago. I too had the same concerns re spinal MRI, particularly as I already have a nerve tumour (facial) so thought it highly probable that I could have others. However, after this amount of time I've come to the conclusion that my symptoms are too global to be localised nerve tumours like the existing one. I still believe that I should have had a full spinal MRI at the time though so can fully empathise. I was in hospital for almost 6 months so they had plenty of time to do it!
Anyway, in response to your question, I have spasticity but it isn't episodic. I take 60mg Baclofen daily for it (recently increased from 30mg) which I simply wouldn't be able to function without. I use a wheelchair but can walk short distances with crutches. The recent increase in medications is due to long-covid worsening, particularly since my last high fever. So yes, it is possible.
You are taking positive steps and doing what works for you which is fantastic! It is very much a learning curve moving forward as there is little knowledge and few specialists in the field. Personally, I think its a basket diagnosis (as in "havent a clue, file under B for bin") in the way it is so readily assigned to such a vast spectrum of presentation but that's just my opinion. There is a vast amount of research still to be done. Things are all the more difficult just now with the pandemic. I'm NHS frontline and I cant imagine how scary & frustrating it must be to be given such a diagnosis now when services are so restricted. I have experienced it with long covid care which is tough enough but going through something like this with only remote support ...I cant even imagine! There are a lot of very supportive people on this forum so please reach out if/when you need to. You're not alone in this!
Take pride in yourself that you are managing and pushing through for your wee ones. Take it a day at a time and remember to be kind to yourself. Dont let anyone make you feel like a hypochondriac (I've been there!). What you are going through is very REAL and outwith your control. It is NOT your fault and it is NOT in your head! ...that being the location of your brain aside 😄 Keep pushing for answers if you're not satisfied, you don't understand something, or you don't feel listened to or have answers to your questions. It can be tiresome but you are your best advocate and only you can know what your body is feeling. Don't be shut down by an assumption of hypochondria. It is a clinicians job to ensure that all organic disease possibilities are ruled out, and even then it is important that your FND diagnosis is not made on negative findings but positive signs. My diagnosis was a negative one which has always left me pondering. I believe the website has an explanation of negative & positive diagnoses.
Stay strong & best wishes x
I completely agree about the wastebasket diagnosis thing. Patients seem to be dividing into three groups, according to prognosis, which suggests to me that there could be at least three different conditions here, or at least sub-types. So treating everyone the same (if they get any treatment at all) seems too simplistic and could be counter-productive. I've spent thousands on a psychologist because my doctor insisted my condition is psychogenic, only to have the psychologist conclude that it isn't. Ironically, though, I do now have PTSD from my horrible experiences in the hospital when I have seizures...
I said to my husband the other day that I felt great before my first attack but now do actually feel like my mental health is affected from the way I've been 'cared' for
Thank you so much. Lot's to think about from your reply and so much that I identify with in what you have said.
Hi my husband has problem with his legs when he has a bad attack. With him it is like a fit of some sort. He gets confused, has a speech problem as in cannot say the words which leads to a stare and sometimes his legs lock up and he or anybody else cannot move them. He cannot walk or even bend them to sit down. His head becomes really hot and whirls inside is how he describes it. All this can last 5 minutes or 20. Sometimes he snaps out of it and says 'I'm back" and other times he has a sleep and wakes up OK. This has been going on for 4 years or more. There is no diagnosis other than FND. He has had brain scans, heart tests but nothing shows up. We have seen Dr Lehn but he didn't have any answers. They did a brain scan while he was having an attack but no evidence of anything untoward. I do hope you can get some answers. There are so many different symptoms of this insidious thing. It is so alarming too as it seems so many young people suffer from it. I do hope you can get some help from somewhere.....we are in Brisbane , Australia and real help is hard to find. Take care.
Your husband's attacks sound scary. I also have many of the symptoms you mention as part of my episodes. Thanks for replying. It's good to know I'm not alone
Just a thought, have you had your blood pressure checked? I had problems walking and fainting. Told it was FND turns out I had very high blood pressure that was causing the issues.
Might be worth getting that checked.
Mine is normal, although on the low side. Will keep an eye on it though. Thanks for the tip
A low pressure can also cause problems. Definitely worth monitoring for a while and see if it coincides with your episodes.
Hope you find the answers you need soon! Don't forget you can always ask for a second opinion.
I have been unable to walk or stand. Balance issues, extreme pressure, feeling of stiffness. It got worse and worse. Recently discovered extreme high blood pressure upon standing/walking or even when stressed sitting/lying down. What was the cause of your high blood pressure? How are you treating it? Thank you
I don't have a reason for my high blood pressure, people have high blood pressure for lots of different reasons. Mine is treated with blood pressure medication. You should share your blood pressure readings with your primary care doctor. They may offer you further testing and take it from there.
Hi I have gait problems for 5 years now and I have to wear a splint to strengthen my ankle x
If they didn't give you a clear rationale for the dx during the consultation, I'd be inclined to ignore it. We are not meant to get our diagnoses (of anything) via a letter and it feels wrong that they directed you to a website rather than giving you the information you needed at the time (if it was Hon Prof Stone's it says clearly that people should not try to self-diagnose via that site). I gather there's a good guy in Sheffield who observes patients over four days to assess them for FND/Functional Movement Disorders. So I might ask for a second opinion with him.
Hi, I was diagnosed with FND and went to
St George’s University Hospital in Tooting London.
Prof M Edwards, Drs J Coeberg, J Flowers, D Paviour and T Teodoro
Telephone 0208 725 4627
0208 725 2470
My symptoms first began 4 days after an epidural injection in early 2019.
My legs were uncontrollable shaking, I had all the scans possible, the last six months I have developed tics/ Tourette’s, I was on a crutch for eight months.
I am now much better than a year ago but I have to be very careful and not overdo it.
My walking is slow and my fatigue is still very bad.
The medication I was prescribed was Clonazepam, I take this 3 times a day, also 60mg Duloxetine.
I honestly can’t say enough good things about the doctors.
I was offered to go on a trial for a week with a specialised physiotherapist and it worked wonders for me in just a week.
The physio you want to see is Cameron Moss, great guy, very nice and understanding and explained exactly what was going on to me regards FND.
Also, please listen to music, this has helped me a great deal when I go for my walks, it takes the focus of your condition, it certainly does for me and without realising I am walking better.
I wish everyone the best of luck with this condition.
I still have bad days, but fortunately more good days since the physio.
I pray that this continues for me.
Hope this was of some help.
Hi
I came across your response. My symptoms too came on after an epidural, I have mentioned this to all the doctors I have seen but they seem to mostly think there is no connection. Have you mentioned this to anyone?
Would be interested to see if anyone shares a similar story
Thanks
Hi there Yes I have muscle spasticity with FND in my legs and one hand. Mine seems to be whenever I lean forward or reach to grab something, it's awful 😞 and like you just given a website to look at
Hi Whirly girl
I am sorry you are not getting the support you deserve. I had to find consultants and ask my GP to refer me. I was able to get a referral to the Rosa Burden Centre in Bristol - it specialises in FND (and Parkinsons support for people undergoing surgery for their Parkinsons) I spent 3 weeks in residential and it helped me find coping strategies as in the beginning i could not even form words - so i received speech therapy, occupational therapy, psychological therapy. The nurses are available 24/7 and trained in FND and there are weekly reviews with your neuro consultant. The OT was excellent and really helped me understand what was going on when my legs went.
The revelation for me was meeting others with the same diagnosis and realising there was hope.
So please dont give up, I can talk to family and friends and some others now. I still can't on the phone or when over stimulated (I am hyper vigilant and lots of other things too!)
I have written this length answer cos i am 2 and a half years in now and know the struggle....
Take care and stay safe
Thank you for replying back with some advice that's really kind of you You sound like you have been through such a lot and that's great news you manage to get help . I live in Wales and at the moment there is no funding on the NHS but do you think I could still be referred to Bristol by my GP?
Take care and stay safe too 🙂
I have been referred to Bristol too so fingers crossed I get seen soon!
It's so isolating to be just given a website to look at isn't it. How long have you been unwell?
It is very isolating and you feel you have nowhere to turn. I've been really unwell for a long time to be totally honest. I had on going spine issues but only got diagnosed last year with this FND . Have you got other health conditions as well ?
Honestly, I'm not sure if I do have other health issues or not. It's all a bit confusing at the moment because all my symptoms seem to have been rolled into one under the FND umbrella but I'm not sure that everything I'm experiencing is FND.
I agree it's very confusing to know what's caused by FND or something else once you've been diagnose with this condition and it seems to get people to listen now is a fight. I've had bad bladder and bowel problems and it's hard to know if it's from my back or FND the bladder clinic have been brilliant and listened to my symptoms which really helped. I am due to see a specialist in urology thanks to the bladder nurses and a specialist. What symptoms are you experiencing at the moment if you don't mind me asking? 🙂
Mainly the episodic gait issues but also fatigue, weakness, hyperreflexia, lack of fine motor control, brain fog, back pain and also a burning abdominal pain that comes and goes.
Oh my god you sound like you have almost the same symptoms as me and no doubt like me you have many more to add to the growing list of weird things that keep happening to our bodies 😁 I know it's not a laughing matter but if you don't laugh you'll cry as some symptoms are just so freaky aren't they?
Exactly, I didn't even know where to start and you're right, there are more symptoms that I didn't even write down 😂
😂 x
A neurologist said something interesting to me a couple of years ago. She said they haven't yet invented the scanner that can see FND. In the same way, they couldn't diagnose MS until the MRI was invented. So doing irrelevant scans and then brushing you off when they're negative is irrational. It's like X-raying someone's ankle and then telling them they're not having a heart attack. I've had four years of this nonsense and it's very wearing. I've tried to be proactive, ask questions and point out new symptoms but became regarded as a hypochondriac to the point where I couldn't get follow-up even for other medical problems where the tests were positive. I've had to move to another country and only supply selective medical records to my new doctor. I'm happy to say that it has worked though, and I now have an appointment at St George's. So hang in there and know you're not alone.
Thank you. This is such a good point. Who knows what we will be able to diagnose in 5 or 10 years time. I also have other medical issues that are being completely ignored because of this diagnosis.
HI again
It's crazy how this all pans out for us.
Pre my TBI and FND diagnosis (this started after i had a bad fall and was unconscious for twenty minutes) I had a really big job as an Area Special Educational needs teacher with other 60 pre school settings to support and I fought and fought for all those little ones to get their help with professionals... In the UK you can request to see other consultants and specialist services.
I would suggest you make requests and ask your GP to put your request on your medical record. Then it is there...forever for you to come back to... if you meet resistance take an advocate. I couldn't actually talk to my GP but my daughter helped me. I still find it hard to talk with anyone medical, i think that fear of taking up their time or being a nuisance or being seen as a hypochrondiac is very real.
Also it might be helpful to keep everything medical and from the DWP in one place, mine is in a shopping bag -nothing fancy - but I know where to find it (yep memory and concentration not brilliant but more than at the beginning)
Just remembered at the beginning, I watched Ted Talks and U tube on FND just to try and understand what was happening.
Take care and thanks to everyone on here, I have learnt a lot.
Such good advice. Thank you!
can you explain how your gait is impacted ? i have a constant muscle engagement of my left leg whenever i move it to the pint of not being able to walk ... it developed after years of excessive, repetitive, improper exercise ... i believe i basically reprogrammed my leg to not work properly ... how did your issue come about ?
My episodes start with my lower back, down to my upper legs contracting whenever I try to engage them. If I sit or lie down, they're fine but as soon as I stand up and try and engage the muscles again they lock which makes it very difficult to walk. I end up walking with a combination of shuffling, dragging and swinging my legs around, depending on where it's hurting the most. I've been experiencing loss of balance and foot dragging (left side) on and off for years and then in late 2019 I started to experience muscle fatigue to an extent I had never experienced before. Then by Spring 2020, I was having moments of freezing/hesitation in my gait where my legs just wouldn't do what I was telling them, often when transitioning from one type of movement to another such as up steps or changing direction. Then in June 2020 I had my first major episode where I experienced the spasticity/contractions I explained above. I suspect I made it worse by panicking which of course causes tension in muscles anyway so it took me about 3 months to learn how to cope with it and understand my triggers.
that sounds very similar as to what i have except it affects the entire left leg ... it spasms and causes the leg to freeze and hyper-extend ... i'm curious what started things for you ... for me it was repetitive, intense, excessive, improper exercise ... i figure now it's just my new reality ... does any medicine help you ?
Honestly, I'm not sure. Mine started suddenly, although I had been experiencing other neurological problems beforehand that had been dismissed by doctors.
i hope everything works out
Hi I class myself as a Veteran of Motor FND now that I am in my 13th year. My symptoms are physical and affect mainly my legs though as time progressed it can affect my arms/hands too. Yes, you can get your GP to refer you (with a special budget) to a FND Consultant, I have done all that and undertaken a Month Inpatient intensive rehab at National Hospital of Neurology & Neurosurgery in London.
The Inpatient program has several therapies on offer and it was helpful in some ways, because you realise very quickly that the other FND Patients on the same program, doing the same therapies have totally different symptoms than you - yet you all have the same diagnosis. And the whole `Cure' idea is based on you self managing day to day your symptoms, there is no magic surgery, pills or any guarantee that the managing will cure you either, sorry to be so negative.
BUT... you understanding the trigger activities is of benefit, because you can tailor your day to help reduce the episodes of muscle meltdown!
My GP said to me when I queried the diagnosis, before being accepted on the Inpatient Program. "Does it matter if the cause is Physical or Mental? Because the only medical option being made available to you is this Inpatient Program". In a lot of ways that made sense, think about all the awful conditions and rare diseases - there is no understanding of their cause in many cases and certainly no cure, only methods of managing the symptoms.
Trust me when I say, if you have seen an FND Consultant and they have agreed the diagnosis, then you are pretty much stuck with that label in any NHS situation.
Remember though, you can have other conditions and diseases existing along with FND as well, like Parkinson's, Multiple Sclerosis and Seizure Disorders . So you could have something else as well- there is no rule saying you can ONLY have FND.
With the Pandemic and everything being unusual in the NHS system, if you can afford it try buying this book off Amazon `Overcoming Functional Neurological Symptoms: A Five Areas Approach' by Chris Williams (Inpatient Program recommended it to me) , it explains FND and gives you a range of Workbooks to go through and then if you really think the book does not fit with your symptoms, fight your corner with the NHS to be heard!
Most of all, accept you might have some limits for now and do not beat yourself up about things you cannot control or complete, especially when you have planned something and it goes awry! Life is too short worrying about those sort of things and too energy consuming being angry or frustrated all the time!
Hope you learn to weather the Storm
Best of luck
Thank you so much for your reply. It is good to hear from someone with your experience 'in the system'. You're right, I think I am angry because I have had to figure this out alone with everything else that we are experiencing at the moment but I agree it is wasted energy. I think my post came on a day when I was despairing over it all but every day is a new day and I am getting better at managing the symptoms/triggers. I started counselling a few weeks ago and that's really helping as well. Thanks again. Una
Hi. I had an experience last year similar. Do you mind me asking what meds you have been on when you experienced the conversion/not walking? I am trying to see if meds aggravate underlying med. conditions?! I am so sorry you are going through this. I understand. You are not alone.
I was on Sertraline and I did notice that symptoms got worse on two occasions when my dose was increased. I'm now back down to 50mg and intend to wean off it over the next month. After my first episode, I also went on Propranolol for migraines but I am off that now. The combination of meds definitely didn't help some of my other symptoms such as fatigue and brain fog. I also think that Sertraline has caused me to develop Dissociation as a coping mechanism because my emotions have been numbed. I hate the feeling. How about you?
Can fnd cut over senses off in the brain ?...cause meds disagree with me totally & for some reason i keep thinking i have no happy hormones & i dont get a temperature eventho i sweat no end really starting to worry me that i can even laugh at anything or wake up feeling remotely happy
Yes meds can cut off senses. I could not feel connections to my loved ones or feel any sort of good feelings.
Think it was meds that set my fnd off in first place & now i struggle taking meds i feel like i'm fitting off them for some reason i'm always sweating in my self its like i cant cool down & i've lost that sense in my body temperature strange but honestly dont get high temp just fever & hot all over not sure if this has something to do with my fnd of not
Sorry you've had/got this problem. It sounds a mirror image of our experience. Help is needed with this diagnosis not verbally told then ignored. I think I signed a petition not long ago
FND with muscle wasting
FNd and driving
FND
Alternatives to FND diagnosis - maybe helpful???
Recovering from FND?
