I'm New And Sceptical

Hi Everyone, I joined earlier today. I tried to write an introductory post then on my Kindle Fire, but hit a wrong button and lost the lot, so I'll try again.

I'm 55 years old and have been ill and unable to work since December 2005. I've had some terrible experiences with neurologist, the worst was at the UK's top neurological hospital in London, where one neurologist aggressively accused me of faking it. Things went down hill from there as I lost all trust in them. I was eventually told I had FND and told to look at the neurosymptoms.org . I was not impressed. I used to post videos about my illness on YouTube at the time, something I stopped doing a long time ago, in fact one of my videos shows up high in Google for functional neurological disorder. You may have come across it. I wasn't too happy with the diagnosis.

Last year my GP thought I should see the local neurologist because of my Parkinson-like symptoms. The local neurologist once again referred me back to The National in London. This time I saw a professor of neurology who specialises in movement disorders. He trained one of the neurologists who has contributed to the FND Hope website. This neurologist, unlike the others I'd met, was kindly and took his time with me. He decided to do a DAT scan to measure the dopamine in my brain just in case I had a atypical presentation of a Parkinson's Syndrome. The scan was done in November 2014. The fact I won't get the result until this Thursday suggests it was clear, so I know what is coming. I'll be told all of my many symptoms are functional.

I have visited the neurosymptom.org site numerous times and have read all of the articles I can find by Stone and Edwards about FND and can't help but feel that a diagnosis is a cop out. In fact I feel they are playing a semantics game in order to make the diagnosis more palatable to patients. When Jon Stone talks about the software in our brains being our "thoughts, behaviour, sensations and emotions" it sounds very much to me like he's saying it's psychiatric. But I also lack trust his website because he classes ME/CFS (myalgic encephalomyelitis/ Chronic Fatigue Syndrome) and fibromyalgia as functional, even though there's loads of evidence for the physiological basis of both conditions. There are over 5,000 medical papers that show physiological problems in ME/CFS alone. So this makes me question what he has written on the neurosymptom website.

Over the last 8 weeks I have had a remission. I won't list all of my symptoms, but I've gone from struggling to walk 20 metres and using my mobility scooter to being able to get around, to walk my dog 3 miles in the morning and 1 mile in the evening. Plus I've been able to loads of normal things I've not been able to do for a long time. My cognitive problems also went, as did the involuntary movements I have. Everything was looking so good I was hopeful I might recover. I had the odd symptom here and there, and a couple of short periods last a few hours when things weren't so good, but I was functioning normal. I was hoping I could once again get back to work and a normal life. I nearly cancelled my appointment for this Thursday at the National because I was so well it seemed pointless. However, things have started to deteriorate over the last two weeks. Although I'm still remaining as active, walking has become harder again because of my gait, my cognitive difficulties keep coming back and over the last few days I have had involuntary movements. It has been a big disappointment.

I am still trying to get my head around the whole FND thing. I am very sceptical as you can see. But I'm not totally closed to the idea. It seems to me that if it was just all about our ""thoughts, behaviour, sensations and emotions" then why on earth do so few people make full recoveries? The whole thing doesn't make any sense to me. It seems there must be some pathology there that's being missed. Perhaps to do with neuro-transmittors in the CNS which they can't measure. I'm trying to keep an open mind but

it's hard. Thursday's appointment will be interesting.

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15 Replies

  • Welcome to the group

  • Thank you.

  • I thought the same. I desperately wanted to be better, my head injury consultant thought it was a cruel thing to do to give false hope. I was told I had a functional overlay. It's 11 years since my accident and I have made a good recovery both mentally and physically. I have ongoing issues with memory, word finding, fatigue, neuropathic pain and most annoying cognitive and executive functions.

    If anything I think it slowed my progress as I was trying to prove to everyone I could get better, only to fail repeatedly. I saw a neuro psychologist who said the effects were moderate to severe in executive and cognitive areas and moderate in working memory. Not brilliant but I manage now I've come to accepting and not constantly fighting my condition.

    When I read about all these movement disorders and dys tonia and other things I found it difficult to fit myself into the boxes required.

    I have nerve damage and have had spinal surgery twice to relieve pressure on the nerve roots. Yet it was suggested that the neuropathic pain should have been fixed by the surgery, the spinal consultant told me at the time the pain would be more manageable but would not disappear.

    I know B 12 deficiency can cause neuro type symptoms, have you had the levels checked?

  • My illness started after a number of infections followed by having a flu jab when I hadn't fully recovered. M.E has been link to both infections and vaccinations. The second neurologist I saw said my symptoms fitted myalgic encephalomyelitis, and I accepted the diagnosis. ME has a number of neurlogical symptoms, including myoclonus, that can wax and wane. Remissions happen in it too. Dr Ramsay's definition, who studied the illness from the 1950's until the late 1980's, is still the best but little used in the UK. name-us.org/DefintionsPages... .

    I was sent to the local CFS/ME service but the doctor found I had a spastic gait, fine persistent tremor, and a positive Romberg's test. Unfortunately for me, the whole ME/Chronic Fatigue Syndrome thing is a mine field, very hard to explain. The emphasis these days is only on fatigue, whereas in M.E the emphasis was extreme muscle fatigue after very little activity and a worsening of symptoms if the suffer persists in the activity. So the doctor at the CFS/ME service saw the other symptoms and referred me to the National in London, and from there things got bad for me.

    I don't know if I've been tested for B12 deficiency or not, but I've had loads of tests. The only test that came back showing problems was a neuropsychological test which confirmed my cognitive problems. Problems with short term memory, executive function, concentration and learning new things.

    In the early days of my illness I searched the internet for answers, like you I never completely fit any of the major neurological disorders. M.E was the only one I fit in any way. I had come to terms with having M.E and had rejected any idea that it's functional. The research is building every year and is starting to show it's biological basis. The only reason I went pack to the neurologist was because I was getting Parkinson-like symptoms, when I mentioned it on a forum the NHS funded for people with ME/CFS, one of the doctors taking part said I should see a neurologist as Parkinson's Disease and Parkinson Syndrome can be misdiagnosed as ME/CFS, in fact misdiagnosis is high in the ME/CFS community. That;s the only reason I'm now back to the position where FND will be the label the neurologist will try to attach to me.

    I guess my main concern is that I may be just being bloody minded about this. Maybe the who FND thing does have some foundation. i'm open to having my mind changed, I just find all the explanations unconvincing. They all seem to lack evidence. Even the so called positive signs Dr Stone talks about don't cover everything.

    I have remissions like the one I seem to be coming out of before. The change is dramatic. They usually only last a few days, although I have had one that lasted for 6 weeks. This one has lasted 8 nearly 9, I'm still not completely out of it, but I am seeing a decline. It is always hard afterwards as I get my hopes up and think I'm on the way to recovery, only to have the carpet pulled out from under me. I then have to re-learn to live with the limitations of my illness. I'm grateful for the remissions, but the decline back to my previous disability is hard to deal with. Sometimes I end up worse than i was before I had the remission.

    Sorry, I'm rambling. It will be interesting to see what my neurologist as on Thursday.

  • Doesn't your head injury explain all of your symptoms rather than them being functional?

  • Yes it does, but I took longer to recover from the physical difficulties than was expected, there was a legal case against the local council as the road surface was contaminated with disel from an earlier accident that hadn't been cleared properly. It was their medical people that sent me to see these experts and to fight the claim. They then used my medical past to explain the functional overlay plus the stress of losing my job and home following the loss of income to say it was my stress being converted that made me have the neuro symptoms like a numb left arm and antalytical gait. I had bruised the brachial nerve and previous spinal injury had caused nerve damage that affected my gait.

    It was telling that they declined to treat my functional disorder as I had had it too long for treatment to be effective apparently, it should be treated ASAP for best results.

    Unfortunately this is still on my medical records. It made me scared to seek medical attention and I mademyself very ill physically when I didn't get a urine infection treated for 3 months. My GP was very angry with me ad I was told I need to look after myself properly.

    Incidentally my left arm still has some weakness, I don't grip well or for any time. I also have a step in my neck from severe whiplash which also affects the nerves.

    They could probably fit the entire population of the planet into the criteria if they were of a mind to!

  • Please read some of my other posts, I totally agree with you 100%. I have stated and will continue to say most conversions disorders will resolve, and will resolve quickly, once the underlying problem is revealed. It is rare at best to malinger on after getting to the root of the initial conversion. FND lumps these two together, and they are separate, and I agree, there is a underlying medical diagnoses for what is going on, but little research toward the aim of finding it. I have dystonia, it has taken years to bring the information out on this, once too thought to be a type of conversions disorder, research and much money and awareness has brought great advancements in this diagnoses. Stay strong, keep searching, keep probing and don't become discouraged, God Bless, Cathy

  • Hi Paul, I was recently diagnosed with FND and like you I was skeptical. But my consultant has done two mri's and a lumbar puncture and loads of blood tests. It is a problem with the CNS but it cannot be measured on any device at the moment. There is a study that identifies each individual part of the brain that is affected when having a relapse. The part of the brain receiving the message shuts down or slows down causing the symptoms.

    I have medication to manage the symptoms and a regular appointment with neurophysio,which helps.

  • Hi,

    I've just got back from my appointment with the neurologist. My DAT scan (it measures dopamine in the brain) came back as normal, which is great news. This is one of many tests I've had over the years, all of which were clear apart from a neuro-psychology test which showed cognitive problems. I've had MRI, EMG, EEG, 2 lumbar punctures and now a DAT scan. I think I have to accept they've done everything.

    The neurologist I saw today said she'd just come back from a conference about functional movement disorders in Toronto. She said the researchers who spoke were adamant that the vast majority of people with FND don't have psychiatric problems. She said the current thinking is the brain rewires itself but they don't know what causes it to happen.

    I said about my reservations about what Dr Stone and Dr Edwards has said about the 'software' problem, and how it sounded to me like they were just saying it's a psychological problem, but they're using a term that's more acceptable to patients. She assured me I'd got it wrong. Dr Edwards is one of her colleagues. I may contact Dr Stone via his website and see what he says.

    Do you have details of the study you mentioned? I'd be interested to read it.

    At the moment I am still well and have minimal symptoms. The neurologist was pleased. She said all they could offer is CBT and physiotherapy, however they only work for some people and the benefits are generally small. She didn't think it would be worth my while for the small amount of benefit I'd get.

  • Will look for the study. My neurologist said that CBT works for people who have symptoms associated with a trauma that may have caused FND but most of the time it's pointless. He advised me not to go to CBT as my condition is not psychological but physiological.

    The neuro physio I see is amazing. She specialises in things like MS and specific neurological problems. The exercises I have help to reprogramme the brain. She changes them every couple of months and I feed back by phone what has or has not worked.

    At the moment she has given me some water based exercises for the pool but if I can't get to the pool I can do them in bed!

  • I'm crying as I write this, I don't even know where to start.

    I desperately want to correspond with someone who has gone through some of this, I just don't know what to do.

    I'm going to try and summarise, which I'm not very good at and I'm sure many of you will understand this is partly just a need to talk about it.

    Dec 2013 I got whiplash from a hair grab assault at work (I worked with ASD and mental health, it was actually a minor incident and only lasted seconds). I had concussion symptoms after, but doctors maintain no concussion as I didn't really hit my head.

    A month later, my car was rear ended, same again, whiplash and concussion symptoms.

    Then, cognitive problems. Sensory overload, executive function problems, memory, hyper sensitive hearing, problem solving, clumsiness, social issues at times and other stuff I've probably forgotten to mention, but no movement disorders, it's all head stuff really.

    It's been a year and 4 months, after 5 GPs, psychologists, a psychiatrist and a few neurologists I've been diagnosed with 'functional cognitive disorder' and I keep coming across FND, but confused by the movement disorders which seem typical of FND?

    I have no history of psychological issues, I'm well educated and had a pretty typical happy life.

    Reading some of the posts here echoing many things I've been thinking and feeling has been very emotional for me.

    Everyone told me I would get better, they still do. For 6 months after my accident I had no doubt in my mind my problems were temporary, I thought it was because of my back pain.

    Various doctors have told me repeatedly they believe I will recover fully, but these are the same doctors who nod at me and practically pat my hand and send me off to the psychologists, the ones it took me 7 months and a psychiatric report to even get a referral to neurology (who told me they thought I was having migraines).

    I eventually lost hope of getting better, as the false hope was killing me, but my friends tell me they're sure I'll get better, my brother sends me articles etc re people who have fully recovered.

    So I've seen several neurologists but only feel that one has really listened, believed me and understood.

    I'm now being referred to neuropsychiatry where I've been told they will do lots more tests and then specialised CBT.

    But I'm so skeptical, I just can't imagine how I could possibly improve now. There was a time that the thought of NOT fully recovering had never crossed my mind. There was a time I wasn't sure either way. There was a time I was hopeful I could recover, then the time I sank very low when that didn't happen. Then there's now, where I'm trying so hard to be open minded about what it is wrong with me and the possibility of improvement.

    There has been no change in my symptoms over all of this, except my hyper sensitivity took several months to come on.

    The changes that have happened to me came on immediately following the accident and have been life changing. I have been told so many many times that it is psychological but it just doesn't fit.

    I feel damaged, I don't know any other way to put it.

    In my 'heart' (I just can't think of another way to put it) I feel sure it is physical.

    It's's been such hard work to get the doctors to listen to me and I feel that my boyfriend and some of my friends and family don't feel it is real. I believe they 'believe I think it's real'.

    As you have probably realised, I really need to talk.

    Dansletete, it sounds like your situation has been somewhat similar to mine, would you be open to talking?

    I'm sorry for the ramble, a lot of that was just catharsis I think....

  • Hope you are getting some help and seeing some improvement.

  • I have just had this label from an arrogant sexist tw*** he has already had to retract half of his letter to my GP and I will be making him sweat with the rest. You have to ask yourself whose agenda or interests this serves! life is all about power struggles between different groups and it's certainly playing out here. Mad bad or sick !!! Who the hell do they think they are !!! Mostly men of course .......

  • What were the results of your appointment?

  • What were the results of your appointment? Do hope it was helpful.

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