I've a question for you all and I'd appreciate your replies if possible.
Myself and my wife Kim went back to see the Neurologist this morning - albeit a different one to her usual Neurologist who's she seen for over 2 years.
She went back due to the shaking in her arms which was causing concern.
He said that Kim's Neurologist believes stress has caused her FND.
We both looked at each other because we know how many people on this site have been told the same thing.
He said FND is not his specialty and Kim is being referred to see a Neurologist who is also a Psychologist at Hope Hospital, Salford.
This is where her original Neurologist is based also.
I cannot in all honesty say Kim wasn't under stress at the time she collapsed in 2012 because she was and she'd lost a stone in body weight too.
What are your opinions on this?
Do you think the brain can be retrained?
He said that it's reassuring the scans didn't show MS or Parkinson, which I agree.
He thinks that Kim's brain signals have gone into overdrive and are overreacting to sounds, lights etc which is causing her body to go into spasm also.
I'm sure many of you have been told the same kind of thing.
Any feedback would be helpful.
Best wishes to you all.
Tony & Kim xx
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LEEJUNFAN
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My FND was diagnosed by Prof Edwards, one of the UK's leading experts on this and his view is that FND is NOT usually caused by stress - he said that there are extreme cases where it can be (and cited shellshock) but that it often and more usually could be down to some other kind of trigger, so you are looking at viral, electrical, traumatic assaults on the brain. So in my case it could be the virus that kicked off my ME or the massive hemiplegic migraine (that also was the starting point of my ME). I was under a huge amount of stress at the time but he (unlike the 'CFS' specialist my employer had sent me to see 3 years previously) dismissed that. He and Dr Stone (the other UK leading light) regularly do, although they acknowledge its role in exacerbating symptoms - as does any sufferer! Neurologists are slow to get the message though, having been told for years that we all have neuroses/ conversion disorder/ neurasthenia.
Suggest you give your neuro the document which Jon Stone wrote for neuros (which you will find on the neurosymptoms.org site) and get him educated!
I was told exactly the same thing after spending nearly 6 months in the neurology unit. Likewise, I was also under stress for sometime prior to onset but not immediately prior (a few months had elapsed in between).
I was initially told they suspected viral meningitis and my symptoms were concurrent with that diagnosis. However, it took them 6 weeks to perform the LP which is far too late to provide a positive diagnosis of viral meningitis. My neurologist, after learning about my stressful past, then very casually told me "I was just a bit stressed". I have a medical background so, as you can imagine, I lost my patience at this point and the air turned a bit blue
Fast forward to 6 months later, after several lengthy debates with several consultants and their teams, and I have yet again demanded another meeting - this time with the FND specialist, rehab consultant, original neurologist, neuropsychologist, physiotherapist, and the nursing staff who had watched me learn to walk again and physically picked me up off the floor when I fell or put medication in my mouth and dried my tears when I was in too much pain to even raise my hand to my mouth (not to mention the complete physical care package they had to deliver while I was struggling to learn how to be 'human' again). After listening to their speeches and pronouncements of 'no organic cause for FND' I very simply asked them if they believed that modern medicine was infallible and if they believed that they themselves were infallible as doctors. I highlighted that, until the advent of MRI, MS sufferers were given 'hysterical' diagnoses and left to suffer intolerably. Now they are given treatment regimens and physio to help alleviate symptoms and attempt to slow the progress. The medics did not like that question at all. I have never seen a full medical team go so red in the face simultaneously! 😂 ...needless to say, they didn't have an answer for that.
We are now in the position that untold numbers of people were in 40 years ago before MRI was the answer to so many questions. While I am very thankful that I do not have a positive MS diagnosis (it is a terrible disease and my heart truly goes out to all those who suffer it's cruelty), I do not believe that there is no organic cause for my symptoms - they simply haven't invented the technology yet to give a positive diagnosis. A 'negative diagnosis' should never be an acceptable one!
I have been symptomatic since I was a child. It took nearly 30 years before it got the better of me. If there is one thing we 'FND' patients and carers have learned its patience. I believe we will get answers one day. Stay strong guys ❤.
Abso-bloody-lutely. That is what I tell them too - they just have not the science to see whatever it is yet. My symptoms turn themselves on and off with stress being no way linked (e.g. legs fail in an instant on the way to a choir rehearsal during an otherwise very peaceful week....but brain surgery last year produced no symptoms in the 6 months prior (when I was very worried indeed) or for 3 months after (when I was in agony and recovery).
I too like to cite MS - and stomach ulcers, which were wrongly attributed to 'stress' for years before the biological trigger was discovered. One of my favourite labels was given to me by a Rehab specialist in my first year of illness - MUPS: medically unexplained physical symptoms. It didn't really get me anywhere but at least it was honest!
Hi I totally agree with your post about stress. I too have noticed when I have high stress I have minimal symptoms but when I am relaxed and stress free my symptoms are most severe. Very strange. I too was once told I had medically unexplained symptoms.
Hi victoriaC, your reply hit my somewhere, I have been left in pain and was told by Drs it was stress and anxiety for over a year, the anti depressants they kept giving me made me so ill, my partner monitor me and when I got too ill from side effects he stopped me taking them, the side effects showed up within 24 hours but the dr said it was impossible and we were lying. We paid to see a private nuerologist as my dr wouldn't help and he said my pain had been allowed to run riot and had become an entity. Last October got to see professor Edwards in London and he said I have FND and need to go into a hospital to be helped. Still housebound, struggling every day, next appointment is in December. As you have wrote, to be left in agony and other awful symptoms and told it's stress and anxiety is stressful in it's self. The way FND destroys your whole life and your loved ones just have to watch unable to help destroy everyone. At least you had more knowledge to argue with them, which is great, sorry forgot anything else I wanted to say, but your post was great to read. Thank you for writing it. Lisa-anne. 😊😊
We went to see Dr Edwards with our daughter, whilst I think he is a very nice man I do think he gets patients on board for funding purposes. After a week in London we now have no answers and no help. It's hard to see my daughter who was a young care free 20 year old to one that now has ME, can't walk far and numb down the left side of her body. I don't think a week in London to 'retrain the brain' is enough!
You've taken the words out of my mouth!! My daughter was 20 at the time, 2 years ago, she was told it was all in her head!!! She now has chronic fatigue, can't walk far and numbness down the left side of her body. The worse thing was they recorded her walking on her phone and told her to keep watching it!!! Soul destroying!! I too feel like we have no help and no answers. We have just been left to get on with it. London was very good, helped her to get up and down the stairs without falling but once the research was finished we were dismissed. No more help! On a brighter note Laura's getting married in 2019.
Regards
Helen
Hi Tony,
Thanks for replying to my post xx
I can identify with your wife's symptoms. Mine started once my mum passed. Back in 2012. But checking back I have also had what they would have called panic attacks since I was 17.
Personally sometimes I think maybe stress has contributed like when I lost my mum. But at 17 no I could only communicate to my doctor called on a Sunday through only blinking. I was aware of him being they're.
However during my VEEG. while I was in Spain 2015 it shows that I had photo & light sensitivity also loud noises.
One of my doctors here in the UK had suggested I had PTSD. But that's wrong in my case. I have had distressing times in the past but I have dealt with them.
If I can help in anyway please let me know.
Lots of love and prayers to you & Kim
Xx
Sorry just to say again doctors try to put me on antidepressants! I say no they mess me up. Don't let doctor write Kim off as stressed etc. If you and Kim believe that's not the case.
Again much love
Ali xx
• in reply to
Great feedback to Tony and Kim.
Twenty-three years ago medicine said I had a "hole in my mind" and diagnosed panic disorder. Now I am housebound by neurologic deficits instead of so called psych deficits.
Guess who got it wrong. As Flo used to say on the TV, " kiss my grits" you panic disorder guru!
Kim's got issues with light sensitivity and is very sensitive to noise issues.
Antidepressants are a short time solution, but everyone is different and I keep Kim away from them.
Stress, as I've always said, is a killer and causes many things, but whether it causes FND is highly questionable as many on this site have maintained.
It certainly doesn't help but it gets used too many times as a quick answer.
All I can say Ali is to just keep taking one day at a time and don't give up hope as it's all we have really.
It is like a rollercoaster and it swings you back and forth but all we can do is try to keep on adapting.
I don't have FND and I count my blessings Ali, but I live with it everyday with Kim and I've seen the effects.
Keep smiling 😊 and keep in touch.
Love & best wishes always.
We hope you find the answers.
Tony & Kim xxx
Hi Tony & Kim,
Bless her I can identify with the light & noise sensitivity it does actually make you distressed.
I'm shaky today so I can't type much x
You sound like a great husband and support to your lovely wife!
Please tell Kim I'm praying for her also sending her hugs.
I'll keep in touch when I can. So much love being sent to you guys!
Hopefully answers soon I understand her pain and frustration. Don't let anyone tell you guys that she's depressed. It's frustrating because sometimes the medication makes you worse and some Doctors. Have no idea how it feels.
hi LeejunFan I am also at the moment under Salford neurology and I was wondering if its the same neurologist as they have mentioned the stress factor to me also x
That's what my 20 year old daughter, now 22 was told!! Well, she was actually told "it's all in your head"! We were all devastated as laura was a happy go lucky young lady. We've been through the retraining of the brain, it has helped her get up the stairs but nothing else. She had chronic ME and numb down the left side, she can't walk long distances. Laura 'blacked out' at work, came home and had the symptoms of a stoke. I really believe stress did not play a part in this.
Hi leejunfan thanx for that info I thought it may be the same dr but it isn't I find my symptoms dont follow a specific pattern some times they happen when I'm stressed sometime when I'm relaxed .I also find loud noises troublesome I hear everything like its through a mega phone x
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I find my symptoms dont follow a specific pattern some times they happen when I'm stressed sometime when I'm relaxed .I also find loud noises troublesome I hear everything like its through a mega phone x
FND?
