This is interesting - I'd welcome you... - Functional Neurol...
This is interesting - I'd welcome your thoughts.
I dont know if am understanding this properly but I took from it that certain people can be talked into agreeing they have issues of some sort which would come under the FND diagnosis symptoms. Am happy to be corrected here just to be clear.
I take this view or maybe my view is clouded by the fact that Doctors are insisting that I have FND but cant tell me what are my symptoms and to be clear again I sat in my wheel chair for more than 5 hours and when I got up to walk my legs were a bit stiff after sitting in the one place for more than 5 hours and so was told that 'my gait' was or presented as an FND symptom. Now I am in my 60s now and feel that I have earned the right to have a bit of stiffness in my joints but thats one thing the doctors identified and again I want to make it clear that this stiffness didnt last long after I got home and was able to get out my chair and walk.
A dystonic event will wax and wane until it totally settles having been medicated and again this situation is being identified as FND by the Doctor and I disagree if you are having a dystonic event then from start to end its a dystonic event you cant jump in and out of 2 different diagnosis for the same event it doesnt make sense. But if I had a mind to this document suggests that I would be on board with the doctor who did the deed and I would agree without question the diagnosis which would make me open to suggestion.
look forward to reading other views on this.
Totally understand where you're coming from and I read it that way too, at least in part. But what I think they are saying is that if people diagnosed with FND are suggestible then it could help with treatments EG if people are told they will get better then maybe they will. That hypothesis (like so many of them re FND) needs testing but it could save people from developing the more serious and debilitating symptoms.
google.com/amp/s/www.physic...
This link maybe an easier read for some.
I agree with eviedotty, the power of suggestion probably means you'll get diagnosed with FND.
Just the fact you say you understand what FND is means you can be diagnosed with FND the way the diagnosis is made needs to be change.
Also the fact Jon Stone says it can be diagnosed without any tests means anyone can interpret the signs as they wish and one can be fooled into believing they have FND.
Certain medical sectors, I'm informed don't need to follow any guidance/nice guidance to diagnose FND thus it isn't a diagnosis of medical exclusion just a person's opinion and what they've excluded in their mind!!
Much better link - thank you 
Its interesting what you say I had my phone consultation this week with the neurologist and FND was again discussed in terms of the implications on an already disabled person through evidenced diagnosable conditions and to be clear as a person in a wheelchair I get independently on a bus get off the bus at the local leisure centre and go for a swim or an exercise class suited to my capacity. Now for this to happen an intensive risk assessment went ahead with a comprehensive safety plan was put in place involving a named first aider on shift would be alerted that I was in the building and attending...whatever...the rescue meds used for my condition would be put in an agreed place and an agreed plan of rescue meds vs need to call an ambulance should it be required was then in place.
Now with the addition of FND to the list with no named symptoms presented by the patient or explained by the doctor involved this changes the risk assessment. This is then agreed by the Neurologist to be 'an opinion' and not a diagnosis but the point being made is what an opinion with no back up of symptoms has on a persons life and how it impacts on an already workable care plan that has been around for years and is still in place but the suggestibility that FND is now the cause throws not just the patient independence into chaos but must surely be considered dangerous medical practice given the rescue meds are to assist where the respiratory system goes down and so the patient with the suggestibility element being of more consideration to a doctor in an emergency situation does actually and has put the life of the patient at risk.
The response was that a certain...unnamed by the Neurologist...condition may have 90 symptoms but the patient may only have 6 of the symptoms on the list and these 6 symptoms still warrant the diagnosis of the said/unnamed condition and the fact that some symptoms can overlap a number of conditions its still agreeable that the patient be given said condition and hence dystonia has a cross over allegedly and therefore warrants an opinion of FND. Further negotiation under dystonia as FND being fixed joints as in the joint no longer moves is absent and therefore the only named part of the FND overlap is absent but because it becomes part of a dystonic flare up it stands as an opinion and will carry on causing chaos in respect of a hard worked/fought for level of independence. I was further advised to stop reading up about FND and to withdraw from all support groups for FND by the Consultant Neurologist
Point here is that suggestibility in some cases maybe attached to a clinician who feels they can make a judgement call and withhold treatment for a potentially fatal situation on nothing more than a suggestion/opinion that this may be FND and not the evidenced and reported condition that has been around for years and is managed really well without the FND.
The outcome is that my case has now been handed to a legal company for consideration of the damage caused through an unsubstantiated opinion.
Good for you eviedotty. They forget how dangerous this opinion is and the impact it has, why is there never any evidence to back this up? Well it's just an opinion is the response. How about they stop offering the opinion in the first place!!
Wishing you all the best with your case. I'd love to hear any progress you make I may well be heading the same way!
It appears to be factual. Some people in other FND groups report this claim as well. Did you have a concern?
I don't, I just found it interesting. I'm not suggestible, which is a good thing given how many times I've been told 'I bet you're just anxious' or, when that doesn't work, 'I bet you're depressed'. What I hope is that these researchers will be able to use this information to help treat people with FND before it becomes severely debilitating or leads to a stroke.
If I remember the article well enough, FND is suggestible. How would you know if you’re suggestible or not? Some FND suffer are more suggestible than others, hence admin warnings in groups about not to post symptoms without a warning. Do you have Conversion Disorder or FND? What if you are anxious or depressed without knowing it? You are free to disagree about the article. But some FND suffer can be suggestible and mimic symptoms around them. I know I have mimic symptoms from others without a thought.
I think there's a scale they use to measure suggestibility and that's how they found this out.
That would make sense.
Thing is, if people with conversion disorders *are* more suggestible (and I'm not saying they are because I haven't seen the metrics that are used to measure this trait but if the metrics are anything like the one used to recognise depression I doubt they are reliable) then is it a good idea for Hon Prof Stone and co to say, repeatedly, that the symptoms can be very debilitating?
My first neurologist said that I was suffering depression that's why I was walking weird and slow speech and jerking. That was 2 years ago. First thing I did when I left his office was to go off antidepressants, still off them. Yes, life is hard, tears often, but I won't be defined as depressed. I never heard of FND. Its not like you Google first then get the symptoms, you Google because nobody seems to know or care why you are no longer able to function as before. I now cope by saying this is my new normal. Certainly not the way I want to be, but I'm still there inside hanging on, hoping that one day someone can tell me why?? All the best to everyone just hanging on coping until someone has an answer.
I found the research in this article interesting but in terms of mimicking - in special needs we refer to this as " mirroring" to engage and allow the child (who may be unable to communicate verbally) that we are on the same page.
Maybe a diagnosis of FND and how it impacts on how I communicate (non verbal at times) indicates how we/i adapt to a world that is harder to navigate? As I certainly do this. But it can now be seen all around us and on TV when everyone is wearing masks... just a thought!
Mirror and motor neurones are very interesting
What was it like leading up to your diagnosis? Did you feel that you were taken seriously?
