FND Conversion Disorder - not treatable

Hi

How many of us have been told that when we have FND Conversion Disorder that it is not treatable in any physical sense and the suggested route is the psychiatric/psychotherapy? I know that I'm one of them. I know someone posted earlier about us all pooling our efforts and getting better research undertaken. So in that vain many may be interested in this article (which I think was peer reviewed and was not a single left-field suggestion) that I found. ncbi.nlm.nih.gov/pmc/articl...

Although I am not a medic no-one has ever suggested to me that some electrical stimulation of the brain e.g. ECT, can be beneficial. Although it seems that although there is marked immediate improvement this tends to fade to minimal improvement I think many of us would like even minimal improvement.

The summary says that the available evidence to date suggests that the application of non-invasive brain stimulation is feasible and beneficial, although that summary is caveated by the lack of published cases. The article is dated 2016.

Perhaps we should be asking our Neurologists about these treatments.

Sitting here on the sofa with my legs still paralysed after 2 hours of my seizure. Not long I know but I have also had hospital admissions were I have been completely paralysised for 5 days and had to be taught to walk again.

No offence intended to those who have been paralysed by this illness for a long time. I'm hoping I'll de-freeze in the next few hours - you just never know how long symptoms will stay after a seizure. I was outside in a paddock we use to exercise our dogs and I fell onto a pile of thorny tree cuttings, just missing the iron and metal things. My arse didn't half hurt as my poor husband drag me over them and then tried not to let go of the wheelchair we keep for such emergencies. If any of you are from the UK and old enough to remember the scene from Last of the Summer Wine when one of them careered out of control down a steep hill in a bath we did actually have a laugh about the situation. The steps up into the house proved the scale of a military exercise! Last night after a seizure I was mute for about 3/4 of an hour. 2 days ago I went out for a walk as I was going stir crazy and had rested up. Ended up lying across the road round a bend. Husband happened upon the scene and can't believe someone didn't turn and drive over me.

Well I'll stop rambling and wait for the backside of my trousers to dry out - casualty of the house steps.

Cheers

Lou

9 Replies

oldest β€’ newest
  • Hi sori to here about your illness I I have fibromaligia I got flu jab 2014 15min later had fall went to Hosp since that had 2or more falls now one a day neurologist said its now nfd I just have no and to falls fall to right side my face all marked have u heard of anything like that falls everyday so sore on family to watch .

  • Sheika, are you using a stick on your right hand side to aid balance ? I stagger to the right and also have right leg weakness, so need a stick to keep safe. I also use my hands around the house on walls/furniture to aid balance/strength. Please keep safe ! Angela x

  • Hi louyse, thank you for making me πŸ˜‚ am so glad your sense of humour is so fantastic, I'm still in bitter mode and you have made my day. Thank you again you've reminded me to keep trying but not to lose myself along the way. I too have a fantastic partner but he worries so much that we have lost our humour. We need to start again. Thank you again from the bottom of my crumpled heart. πŸ€—πŸ€—πŸ˜ŠπŸ˜ŠπŸ˜‚πŸ˜‚β€οΈπŸ’•πŸΆ

  • Only once and by someone whose competence was questionable - but that sent me searching and then the first person I looked up was Jon Stone (author of the neurosymptoms.org site) and the second, who I got to see, was Dr. (now Prof.) Mark Edwards - and him I found via a BBC documentary treating functional tremor with deep brain magnetic stimulation. My inpatient physio under his care in London did improve my FND of gait (rather than cure it), although I never received any of the groundbreaking treatment he was pioneering at the time which was around functional tremor.

    I also benefitted from a rehab programme under the ME team here (ME suffers from the same organic/psychiatric controversy and is similary misunderstood and misrepresented by the medical profession). This with its bio-psych-social approach did not overplay the psych card and has helped with manageability of symptoms - I haven't worked out how to make them go away (although they do disappear & I can be suddenly symptom free for months) or why they keep coming back but I do at least know what makes it worse and what helps.

    My first neurologist told me this needed psychiatric input. But he also missed a 9mm aneurysm on my brain scan so he clearly was not a very competent neurologist anyway. My new neuro team in Sheffield who carried out my brain surgery to deal with that little issue will hopefully be more enlightened.

    Added to that, as I have been seen by the ME team's neuropsychologist for a number of years now on and off, and she is of the view that I have dealt with the significant emotional and mental ramifications of the sudden and total collapse of my health, career, financial stability etc. remarkably well and that there is little (apart from crisis management and support) that she can do professionally in my case, if any new neuro were to repeat such a suggestion I would tell them that I really needed to see someone who had moved on from the 1990s understanding of the phenomenon and suggest that they hand my case to someone else more up to speed.

    One day, perhaps when functional MRI and SPECT or some other as yet uninvented scanning have become de rigueur, instead of extraordinarily expensive procedures often reserved for research programmes, someone will say 'Oh, THAT'S how you check for these conditions...'

  • Louyse.... you've made me smile!! I remember that episode... also a couple of weeks ago I fell whilst walking the dog... covered in mud up my back and knees and hands.. only down side was only 2 of my dog walking group got to se πŸ€£πŸ˜‚πŸ˜œπŸ˜†πŸ˜. They all would have benefited from my fall. At least I missed the dog poop I was attempting to pick up πŸ™ˆ. I tend to get what prof Edwards calls Tourette's kind of body jolts... they've got worse at night but better in the day (unless I'm trying to sleep 😭😱), which is something. Then same day I forgot oven had been on 30 mins and put hand in and burnt it 😝😩. I think humor is so essential as laughter increases that happy chemical in the brain relieving stress (of course I'm a fully qualified clown so I can state this as fact) ! Well it's a wet day and I've got to take a broken mirror to the dump or just sit and play tipping point on my phone ... mmm what a choice πŸ€“. Have a better weekend and here's to storm Stella from NY brining me rain for my garden xxxx

  • Wow what a time you've been having. Remember the scene well...favourite family viewing it was :) will read article thanks.

    I've had no CBT etc but 5 days intensive neuro Physio helped me learn techniques to manage my gait disorder better....2 years on still over do it .....then my left leg gives in again. Hope you improve a little soon. Lucy.

  • Louyse

    Lou.

    Thank you for your post and for unearthing of the technical article. I read it and will save it in reference.

    I appreciate all the replies you have received. Although I experience transient episodes of limb paralysis, I can't begin to imagine what the level and duration of paralysis that you and others are going through must be like. It requires an ability to cope and summon personal strength that I simply do not possess. You are all extraordinary people to keep a sense of humor and awareness.

    After neurosurgery last year, the nurses tried to get me up for a stroll. The blood pressure collapsed and it took several of them to get me back in the bed. They summoned a legion of PT experts to assess my ability to walk the next day. They started by saying they wanted to see me do stairs. Before I could even get out of the room with the walker, they were so horrified by what they saw, they said I must never use stairs without someone being with me.

    My wife said "what's the big deal. We had been living this way for years.". The medical experts then left speechless.

    Through this process, I keep backing up trying find a starting point to tell doctors and researchers what this is like. I finally gave out and now read the research like this:

    " My nervous system has changed. Until you accept the fact that my nervous system has changed, you are not going to be successful in determining cause or how to help me recover. You may give temporary relief - which as one of the replies noted - would be a welcome breakthrough, but you are still going to be stuck trying to undo something instead of helping the whole body, mind and all to catch up with those changes and allow me to gain instead of lose functionality.

    I would give up every material possession I have in life to get a chance at the three techniques described in the research. I am a willing guinea pig. But medicine has to stop looking at how to fix me and to start looking at me as an organism that has changed the way it functions and how can we support that change by using those techniques to facilitate it coming back in synch and getting it all to work together in a new way.

    They have to stop trying to make me what I was before my nervous system changed. I cannot go backwards.

    Sending out love to you all as my dear friends.

    Dan / Seattle

  • Louyse

    Lou.

    As a brief follow up to my reply, I did marvel at the research starting on page 40 under the subsection "neuro physiologic aspects..." where the authors talked about " functional abnormalities in the motor cortex...". There is that word functional again. If I did not have symptoms all my life, then functional abnormalities in my motor cortex now must be because something in me changed. I just cannot overcome that hurdle. Is it known pathological disease, not yet identified disease, or, is it that how the myriad of molecular components in me working to keep equilibrium now don't do that so well; this is what I want medicine to tell me. Until they understand the essence of that question in each of us as individuals and diagnose that accordingly, then I am skeptical that researchers will ever be able to design studies that prove efficacy of isolated treatments models. This will keep us from getting access to those treatment benefits.

    We all do not have the exact same diseases or conditions underlying our symptoms. We do share enough commonality though to get research pointed in a more productive direction than they are now.

    We have to take the fuzzy edges off of our problem and create more direct channels for diagnostics and early intervention treatments like the ones mentioned.

    I want to get the options narrowed down. The low hanging fruit is getting psychology and psychiatry out of the way on the front end. They have useful applications down the line but should not be up front issues unless direct cause and effect can be made. It seems to me those cases are less in number for the population of sufferers.

    I stop now. Best to you all again.

    Dan / Seattle

  • this is the web site that my motor specialist gave me. hope it helps. neurosymptoms.org/functiona...

You may also like...