I'm New to the site and would like to share my experiences of fnd. I retired in 2015 and was looking forward to doing everything in retirement .In early 2016 I started with balance problems and a tremor in my left hand this escalated in to loss of speech severe weakness in the right hand side ,despite several clinical investigations and being treated for a stroke the symptoms persisted.I was finally diagnosed in 2019 with fnd To be honest I had never even heard of it .I was told by the consultant that no treatment was available as I was out of the catchment area and she had a massive waiting list.I was referred back to my local physio and occupational therapists who were great but had no knowledge of treating this condition .I am now on my own with only family and friends for support .From being a fit and positive person I wonder what the way forward is .I'm sure many of you are in a similar situation and I can only sympathise but hey tomorrow is another day I try to look at the positives and suppress the negatives which is important I think for fn d sufferers.
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Dave-147
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hi and welcome, I had swift onset and they thought stroke but after three days in hospital discharged. neurology was planned for 6 months later not happy with that and my GP got me an emergency appointment . it took 18-19 months to diagnose FND and i have been discharged from 2 neurologists with no further action. it is very frustrating at times as i walk into walls or worse the road so my wife has to be with me all the time which puts a strain on her. i had volunteered for an FND trial which was neuro-physio based and seemed to be working but then covid hit and it was cut short(not sure it will start again).it appears FND although second on the list for neurology does not get the resources it requires although there seem to be plenty of on going trials to learn more about it, there is nothing treatment wise. i have good days and bad ones(more bad) and you just have to live the best you can and keep on at the medics to get you help what ever it may be hope all goes well
I totally agree the resources are just not there ,like you some days are better than others.I find it very frustrating when the simple things become a challenge .I have a meeting with my GP in two weeks to discuss funding for some intensive therapy.watch this space.Nice to hear from you Kev stay safe.
hi i am on a waiting list for PPSS persistant physical syptoms services they seem to have a holistic aproach and bring in different services in one hub good luck.
Hi , I was first sent to physiotherapy by the neurologist, but they had no idea what to do the standard exercises could not work. then sent on to hydrotherapy again did not work sometimes could not even get in the pool. finally they thought they would try neuro-physio , which works on the physical and the mental aspect . it was the neuro-physio who put me forward for the FND trial which i got on and neuro trial and not the control. it was a nine session intense course but i only got to do seven as covid struck.. first i was videoed walking and we identified what was happening in my case i was thinking how to walk(it was not automatic). there were exercises to do but tailored to me and my needs. it dealt with the physical in the first few sessions and the mind was going to be helped in the last few sessions but i never got to do them.my walking did improve i am still unsteady on my feet and my wife helps me when we are out but it would have been good to get the brain side training but maybe in the future. good luck
Hi Kev, Sounds like covid did you no favours it's good you r mobility is a little better but not having the brain therapy is a shame ,but it does prove that with the right treatment things c an get better..keep positive.
I also have to think, use my brain for the normal things, which explains why, when I'm tired, difficult to walk or use hands. Getting frustrated just makes things difficult, so just do what I can on good days. My left side is usually numb, always bumping into walls on left, neuro surgeon said it's not from my spine. Fascinating how the brain works until it doesn't. Oh well. One day at a time. Take care. Moni
Hi, Hope you're ok frustration is a big problem and fatigue sometimes shuts your brain down and despite wanting to do things it's just not possible .Sometimes my body doesn't get a warning that my brain is about to switch off which is when you fall and bump into walls .
Hi Dave, I have very similar symptoms getting progressively worse over the last 5 years, I have asked several times if things get any better with age. It started when I was 56 years old with stroke like symptoms (3 visits to hospital etc etc). I have been told to get on with it and have a review every 12 months, feel totally let down by the system. I would like to hear from anybody 55 or over and see if we have any hope for the future or plan accordingly and live with this disorder.
The warm climate helps so we where planning to move abroad when Europe opens up again.
Hi Tanycoed I totally understand where your coming from hospitals never look at the whole picture they just treat the symptoms stabilise you and send you packing.I wish I could give assurance that things get better with time in my case it's not happening.I think there is a lack of understanding by some medical professionals as happened in your case .Also the lack of qualified people to treat the condition is a sadly lacking.I am normally a very positive person but have to admit the last 4 years have been very testing.I think what worries me most is not being in control.I think the way forward is to pace yourself physically avoid stressful situations and try to look at the positives in your life .I know easier said than done but the more you worry worse things can become.Take care.
Hi Henrietta, Thank you for your reply I will look into getting the book you suggested .Support in the UK from the medical profession is not great .It's good to have input from other f nd sufferers to help us all understand this sometimes complicated condition.Take care and thank you.
Hi Dave. The book mentioned above is written in Doctor Speak. If you have a background that includes anatomy and physiology, you will be fine. Otherwise, be prepared to look up things.
Hello sweetheart,Am thinking about you just now, I have had FNDfor 10 yearsand live with hubbie, we are both retired,
FND can make you have all sorts of problems, sometimes they are on going, sometimes they get better or sometimes they stay with us always,
Was diagnosed after being in earthquake and very bad accident plus physically abused as a child, its a long story and all happened a long time ago, but they say that this is why I have fnd, perhaps there is a lot of stress for you or past issues as sometimes fnd is due to this,
Hi, Thank you for your reply it sounds as if you have had a very tough time of things .I personally have had no particular stress or traumas in my life but have still got fn d which apparently happens in 50% of cases.Fortunately I have a good support network of family and friends which does help. I hope you are getting the help you need and remember tomorrow is another day. Take care of yourself and best wishes to you.xx
Hi sweetie, thanks for your support,went to have the camera down my throatyesterday, was petrified!! but had the sedation and the procedure was ok, except the sedation knocked me for six, was off my feet for 2 days!!! but am ok now, will not know results until i talk to my gp. thank you so much for your support,
How are u doing?
I have my husband and son and daughter in law to catch me if I fall, it is so good to have that someone who cares.
Hi, Sounds like when you had your endoscopy you had a reaction to the sedation ,when I had mine I had the sedation and was fine 10 mins after .Might be a good idea to mention it to your G P when you speak to him or her.
I'm ok thank you today has been an alright day .I hope your results are positive.Take care xx
Hi, yes defo had a reaction, am ok now and proud of myself that i got through it. yes as going to tell my GP when she gives me the results.Your email helped me just to know that you have been there.
thank goodness that you had a good day , will let you know the results, best wishes, hope you r ok luvxxx
Hi,Hope you're ok this morning I'm doing ok thank you.Being proud of yourself is a positive thing which can only be good for your self esteem.They tell me there is no cure for this condition but if you can accept where you are now it helps to manage your symptoms and move forward. In reality that's easier said than done but I'm working on it.
Hello there,Had the camera down my throat and am truly proud of myself!!!
Had to have sedative, which sent me bandy for 3 days! but am ok now.
thank you for your support.
I ONCE ASKED MY GP COULD THIS BE CURED THE ANSWER WAS
SOME PEOPLE GET BETTER STRAIGHT AWAY, SOME PEOPLE GET BETTER THEN RELAPSE AGAIN, AND SOME PEOPLE NEVER GET BETTER BUT LEARN TO LIVE WITH IT.
I truly believe in the above, but no matter which it is,if you accept what you have you can still live a happy and forefilled life.
Yes, accepting is easier said than done, but you you can do it, dont fight the symptoms but at the same time your gp must be aware of every new symptom and be seen to be doing something about it. eg tests, madicaton etc.
Please try to sit back and go with it, know its so hard,
Hi, I totally agree we have to accept where we are now and I have to admit that is one of things I sometimes struggle with, having been a very fit person I found this alien.I am now learning to adjust and accept this is me .I think if we can improve to an acceptable level I can live with that.Hope your day is going ok.Take care xx
Hello hon,So glad that you r thinging this way,it will help with life better, relationships and going forward, yes agree with you it is very hard and a VERY BIG struggle, but if you GET IT then you can adapt life and get some happy back, Undoubtably it is a tough struggle, so give yourself a big pat on the back!
My day has been crap-you have got to laugh havent you!- have number 1 son giving me grief at the age of 28! they never grow up!
Hi, Know what you mean about sons mines nearly 50 and still makes the wrong decisions .We wouldn't be without them though mines very supportive really.Sorry to hear you have had a rubbish day.A tip that my occupational therapist gave me was don't stress about things that are out of your control,you cannot change them.
hi there,The kids never grow up do they! you would think that by the time they are30, then you can have a quiet life, but they always have problems, yes, we would not be without them, but just wish they were settled and getting on with a quiet life!
Thank you for your thoughts. Yes stress makes it all worse dosent it!, I wish I could stop stressing, and am trying to just live for the day.
My counceller said you cant change people or what they say, but you can change the way you speak to them, hence results, easier said than done!
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