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.