I have lived with dystonia now for 20 plus years, it became generalised a few years ago and in Jan 2019 when my Neurologist had no more drugs to offer he took the decision to 'tender me out' to his colleagues one of who had done a course or training in FND.
I am not going to go into a lot of physical details here with regards to symptoms but I will say I have a rescue care plan which will bring my respiratory muscles back to working order. This became necessary due to the number of times I have been attended to by different arrests team during a dystonic storm and on one ocassion this involved the arrest team calling in my family to say their goodbyes at 7am in the morning when they were getting ready to go to work. This was done as the arrest team were struggling to get me back . This rescue care plan along with the introduction of an American based management package has significantly improved my life and brought it back from being potentially threat to life.
Added to this my own GP ran her own tests and were action was needed it was followed up accordingly and again very much more improvement to my life in general. These tests should have been part of the FND assessment.
Now in comes the FND diagnosis. The appropriate checks etc as laid down by Doctor Jon Stone were not followed. It was appropriate and I did challenge the diagnosis due to poor practice and the out come of that was ...you are quite right I did not do this and that, apologies were offered along with an invitation that if I would like to pursue an FND diagnosis then I could supply videos etc that would be looked at...
Now coming right up to date of a very long sarger...I am taken to the a&e with dystonic problems which were out of control due to the corona virus after effects. The attending doctor had only one thing to say and it was this ...you have FND there is nothing we can do for you. The care plan available to them was discussed but treatment was declined because I have FND on my records. During the consultation there was an incident which left an injury and me bedridden for 2 weeks.
A complaint was made...investigated...and followed up by putting a red alert to my file with an instruction that the care plan must be used. I attend hospital again and clearly this other doctor had got the memo as his face was like stone with a very passive aggressive manner this time making sure there was no physical injury...but as he pushed hard for me to accept that I was either a drug user of some kind...had a mental health issue which required me to use prescription drugs and when that wasnt going to happen he turned to the FND diagnosis in my records. My response was given I was truly exhausted and had a number of issues in my lungs...asthma, lung damage from the corona virus and respiratory muscle spasms from the dystonia to ask him if we could jump this forward to the bit were he lets me know if the care plan is happening or do I need to remove myself to a place of safety as I wasnt feeling too safe right now...his response with a stinking tone of voice...oh yes you will get the care plan which he administered and I left the hospital without the normal doctor check in.
oh but this were the end of the story!...but no. I have had amazing support and treatment from GP services throughout and indeed it is still ongoing related to the corona virus. I have now been advised by the attending GP that the diagnosis of FND now supersedes the diagnosis of dystonia which in real time means that my respiratory muscles crashing as they do putting me into what is medically called respiratory distress which is followed with cardiac distress is now being seen as FND and as such the care plan that has been used to keep me alive is no longer guaranteed...fear does not cover this as FND has essentially now signed off on my death certificate...
So back to the Neurologist who started this ball going...FND is now being revisited under POTENTIAL THREAT TO LIFE...which is the potential outcome and having been successful with the investigation with the a&e dept it adds considerable weight to the need for this to be looked at again.
Pointers in this argument are as follows...on the symptom website clinicians and patients are sign posted to it states dystonia as a symptom...dystonia is a huge huge standalone condition with more angles and labels than epilepsy....this site is a non validated site and there fore the NHS are using a site in the treatment of patients that has not been validated by the NHS who pay the clinicians to work...
It follows then that the disclaimer on this site will be part of the investigation. I would hope that someone from the FND hope organisation can read this and possibly pick it up as something that requires further discussions as to the suitability of dystonia being on there and if it needs to be on there someone can take the time to educate them self in respect of dystonia awareness and possibly break down exactly which part of dystonia should be named. I ask this because the doctors who have attended me for more years than I care to count are now having to look at just how legal is it to use a site that is not validated by the NHS given the potential threat to life this particular symptom could cause someone who has acute respiratory distress during a dystonia flare up. This in terms of dystonia is still dystonia but would come under the heading of chest wall dystonia but the general label of dystonia makes no recognition of just how complex dystonia is as a standalone condition.
I thank you for reading such a long post and do urge everyone to have your symptoms assessed as a standalone issue and not as FND.
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eviedotty
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Hello eviedotty Wow this is incredibly unbelievable. I knew something was not right. That website that keeps being referred to is what I have always believed to be a place where Dr's chuck everyone they cannot figure out.
Basically FND standing for we don't know what is wrong with you. Those websites they give us to check our symptoms are not accredited by NHS. No one listens.
The FND clinics are full of psychiatric clinicians including my consultant. They think we are mad rather than looking at each person's individual symptoms.
Anyway I am glad I saw your post. I am definitely seeking a second opinion as I have been trying to tell others on this site.
I used to have breathing problems like you and was part of a blue call once. It was crazy and I wont go into details. You need a second opinion and I wish you knew at first not to push for an FND DIAGNOSIS the Dr's are just leaving people in that category for dead.
I was signed up to the lishman unit and it was full of psychos and when I mean psychos I mean people who may have had accidents and lost some capacity to make decisions or were born that way. I opted out and never stayed. It wasn't for me. It was like an asylum with doors opened with cards etc. We were told you can leave voluntarily but didn't believe it for a second.
Anyway, you need a second opinion because your condition is not right. This is not right.
Thank you for your kind words...I have been under a Neurologist for probably 10 years or more and successfully treated for dystonia. The problem came when I took life threatening side effects or threat to life due to the set drugs for treatment. Now during these difficult times I did some research around information I found on the dystonia website and it was incredibly baseline/easy/hard to believe that this would work...I read everything I could get my hands on...spoke to my pharmacy as if its drug related they are the ones in the know! now she knew about this and had heard of it but never used in Scotland...having pulled all this together I then attempted a conversation with my Neurologist who actually laughed me out the room and I kid you not!...now having nothing more to offer himself he then tendered me out to this doctor who had done an FND training course. I complied, went to the appointment and the clinic setting was horrendous with a more poor level of care than you would ever get anywhere. With hindsight I think probably the dystonic event scared them so much that they wouldnt approach me and left my son to attend to me till things got really bad then my son went and asked them for help...the eeg went ahead whilst I was recovering from the event and by that I mean I had taken the rescue meds but they take around 30 to 40 mins to kick in given the setting...I was then subjected to staff/doctors coming into the room having been called by the eeg staff and they walked around me while saying out loud...my I didnt expect to see this when I came into work today...interesting...wow and so it went on. The issue went into my respiratory muscles and my son started to get quite alarmed as if we were at home he would be calling an ambulance and let the staff know this...doctors were alerted again and my son was told....no no no theres no need for that we have plenty of doctors here,,,the eeg staff eventually told my son if he thought I needed to be in Resus then he should ignore the doctors and call the ambulance as no one would get in the way of him caring for mum. Eventually things calmed down and the rescue meds started to work...now am exhausted, not happy at sitting in a chair with this going on I should be laying down etc and the FND doctor asked me to stand up and walk a few steps having sat in the same chair for what was now 5 hours, she asked a number of questions that I struggled to concentrate on given I was still recovering from the dystonic event and pulled all that together to call an FND diagnosis.
This was challenged with multiple emails back and forth the outcome of which is a letter that could easily have been written for a 'Little Britain' sketch as in yer but naw but yer but naw but you still have FND. This was ended with statements of...you are quite right I did not follow the laid down diagnostic procedure...you are right one event does not make a full diagnosis of FND and an apology and then ...total class this one!...it is the fault of the good doctors Stone and Edwards as they have the clinical facilities and time to do a full examination and I dont...
Life went on and it wasnt till I went into the a&e dept and saw doctors I hadnt seen before that they pulled out the FND diagnosis to refuse treatment at the time I was asked to go as I was having ongoing treatment for the complications of the corona virus and by that am talking about lung damage....I got home tried to manage on rescue meds but couldnt so a few days later I was back in and this time got a doctor who was happy to read and follow a care plan...a week or so later I was bad again and went back in..
Meantime the clinical investigation had been completed with a huge thank you for giving them the chance to reflect on their practice in the dept etc etc and apologies...well this time the doctor had clearly got the memo as his face was like thunder the moment he set eyes on me and he put me through the same bullying routine as the other doctor but this time I very quickly told him ...could we move this along to the bit where you tell me if am going to get the care plan or do I have to remove myself to a place of safety at which point he shut up and simply stated ..oh you will get the care plan and under his breath muttered you made sure of that!
Time goes on then I have a conversation with my own GP who informs me that I am now being seen as an FND patient and not a dystonia patient as has been for years and this means that as the rescue meds are class A drugs there is a chance that next time I run out of them there may be a problem for me getting them.
So I am now on my second investigation and awaiting the outcome with my Neurologist direct. I am giving him the chance to sort this out and if he doesnt I will take this down the formal complaint route again as on this issue my very life may depend on it...
This is the worst nightmare ever as I have been attended to by the arrest team who struggled at one event and my family were called in to say their goodbyes and at no time have I ever felt fear because I have always without exception felt safe in the care of the attending doctors and now I just feel that with the FND superseding the dystonia diagnosis this has put my life at risk as now the dystonia instead of being treated as a standalone issue is now being seen as part of FND which as we know is expected to be treated by some kind of talking therapy...
The complaints department at your hospital...I phoned and asked for details of the complaints procedure and I have followed this. They could not have been more supportive during the whole procedure. I did make it clear that I dont want to cause trouble but simply to make sure that attending clinicians operated in such a way that they listened and didnt just make assumptions.
In the case of dystonia being seen in the a&e dept it is more common to be a situation of someone having taken some kind of street drug which they have reacted to or a prescription drug for a severe mental health condition but in my case I have cavernomas in my brain that have bled and caused the dystonia so it is very rare but that shouldnt mean its to not be believed as they have access to the MRI scans which show the cavernomas...I have 3 in different parts of the brain but the one in the basal ganglia is the culprit for dystonia.
Now when I refused to be bullied into saying I have taken a drug of some kind they then turned to the FND diagnosis...either way it was severe bullying in a place thats meant to be safe when you are unwell and its quite concerning that corona virus was not allowed to be spoken about in the middle of a pandemic for no other reason than I have an FND diagnosis on record...essentially making corona virus part of FND!...beyond ridiculous and downright dangerous I would suggest and I am still in treatment for a damaged lung from the virus so dystonic events may well happen again triggered by the lung issue...
Bringing this to the attention of this site it is my hope that the subject of dystonia being on the list of symptoms is further discussed as the topic is huge with potentially fatal complications when the respiratory system is involved and the FND site pays no attention to this fact whatsoever and so it is my hope that as they have taken on dystonia that they need to take responsibility for getting the facts right and not to put mine or any other persons life at this level of risk...the arrest team whilst I am extremely grateful for them is not an experience I look forward to repeating...
Now am not actually sure what this means but I was told yesterday that my FND diagnosis is being downgraded from what was explained to be an opinion and NOT as was told to me a diagnosis...
I will now get a letter or copied into the letter that other medical professionals will get and then see whats next...watch this space...
I am sorry to read about such horrendous treatment .I hope everything has been resolved .Has there been any update / progress with your doctors ?
I sympathise with you massively .I feel like FND is given when they don’t know and want to put the onus on patients for being ill .The medical journals talk of illness belief (patient believes
they are ill so they remain ill) and how those who do not accept the FND diagnosis as remaining ill (implying that their refusal to agree with their diagnosis causes symptoms to remain) .I think they call it FND in order to trick patients into agreeing that they have a conversion disorder as that was the old term for this .
I have even read articles that say acknowledging the patient is ill perpetuates the illness cycle making the illness worse .Therefore you are to essentially ignore it and only speak in positives to the patient
I had physio ask me whether I had watched someone on online move there neck like that ?
wow that is just so wrong on so many levels like you would want to copy an illness like FND...some people have no life as a result of this and makes living with dystonia as I do feel like a walk in the park
Yeah it is terrible that they believe that people are pretending to be sick or don’t help them .
Your right to complain it’s dreadful they they should ignore something as important as the respiratory system .
My discharge letter reads as more as an opinion then a diagnosis : movement disorder ? Functional .Organic causes need to be investigated .
There is nothing definitive .
Did they eventually completely revoke the FND opinion as you obviously have dystonia ?I don’t know how they can maintain it you have an organic cause and were being treated for dystonia already .
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