Sufferer medical trauma


New Here
I live with 2 acquired brain injuries from a medical condition called cavernoma...I have 3 in my brain with each bringing their own challenges that I have coped very well with using CBT and a hand written daily journal. The problem started when my Neurologist told me he had no more pills he could offer me as there had been a very poor outcome to everything he had tried which is true as if there was a life threatening side effect then it came my way and had to be medically dealt with. Having anticipated this problem I had done my research and long story short found a care plan that is not used in Scotland but is baseline used in America...I read everything I could get my hands on as its simplicity seemed to good to believe and I as I always have done met with my pharmacist who checked out my research and gave her view. I have found my pharmacist to be so helpful and gets really excited as my condition that is causing the medical problem is dystonia and its very rare...moving on...the neurology appointment that caused the problem to start with was my neurologist the very day he told me there was nothing else he could do was the day I introduced him to the American Care plan, which is baseline treatment in America for dystonia and if you dont respond to this then you are seen to not have dystonia and to be needing further investigation. Well his response was to laugh at me...moving on things got bad ...I spent 3 weeks in hospital...I told the doctors over and over that dystonic events get worse when there is another medical issue going on and at this point it was extensive dental per the journal that I keep and have done for 6 years so that I can read my condition and act or advise accordingly when hospital treatment is needed the plus one I call it...on this occasion was done and things settled back down. However the neurologist decided there must be some psychological component to my problem and referred me on. The first appointment I had lasted an hour and can only be described as so confusing that at one point I did wonder if the woman realised that I was a patient and not a student as I felt like I was getting a tutorial. I did eventually get to say all that you have said is all well and good but this is the reason am here and I did email you a copy of my journal summary relevant to what I thought we were going to talk about today.Her response was that she didnt have time to read the email nor would she have time to read the hard copy that I left her with....left me a bit confused as to why I was there and now I will jump the story on to the big day it all kicked off....I attended a clinic for the purpose of an EEG and while I was there sitting for so long under the white lights of a hospital waiting area brought on a dystonic event....I was extremely well cared for by the nursing staff...rescue meds given and dark room away from the audience of other patients etc my son was with me so I wasnt alone as dystonia can take away the power of speech at it height...moving on I was taken into the room wired up for the machine while still recovering from the dystonic event and the EEG staff showed concern as my respiratory muscles started to be affected...conversations were had/doctors called into the room and the outcome was that your mums fine she doesnt need to go to the ED there are plenty of doctors here...the response from the EEG staff was to tell my son he knew this condition better than the doctors as he lived with it so if he felt an ambulance was needed he was to go ahead and call one.....the doctor came in eventually and fired question after question I would normally get the treatment in the ED then be left but monitored to make sure that it was working as some times it needs a bit extra and I have spent time in HDU and been intubated on a number of times due to a severe event and also been a frequent flyer with the arrest team at my brain would close down ...I would answer a question were I could my son would answer were I couldnt and all of this was done while am trying to recover from the event....jumping forward again and the outcome of the whole episode was that the video they took was discussed at a team meeting and they decided to change the diagnosis to Functional Neurological Disorder.... FND
I have challenged this with the doctor concerned...outcome...she didnt see the dystonic event start and therefore cant take my word that this is what happens neither can she take the word of the highly qualified nursing staff who assisted...I challenged my own Neurologist....outcome...he realised that him representing a dystonic event starting...being medicated ...then in recovery becoming an FND event sounded ridiculous and said the FND needed to be downgraded but it was to be kept on my records.
I moved to second stage complaint and the outcome was ...I had no other neurological conditions...I have attended the dystonia clinic for 10 plus years and am a patient of neurosurgery as well???? ,,,but,,,I have no neurological conditions that are diagnosable so I therefore have FND....
I am now at the stage of having the matter looked at by the ombudsman and am awaiting the outcome of this...
The further outcomes are that FND will now be the primary diagnosis and the laid down care plan will be voided...first visit to the ED following this day I would not be getting the care plan and to prove this is FND and not dystonia my arms were pulled while in full spasm and a severe shoulder injury occurred...sent home took the home rescue meds and this didnt last so within 24 hours was back in an some aggressive behaviour from the doctor but got the care plan treatment....also I have been alerted by my GP services that the home rescue meds now that I have been diagnosed with FND my not be available to me again when I run out...these meds do avoid a hospital trip and can keep my lungs going till I get to hospital on investigation went ahead following a complaint to the ED were I emphasized it was education I was looking for and not discipline...outcome....a thank you letter and my records have been red alerted but the last trip to the ED my plus one was a post covid event and the same aggressive behaviour went on until I asked is the care plan coming out or do I have to remove myself to a place of safety as am not feeling too safe right now and so it goes on and on and on....I will add to this that the aggressive behaviour etc went on without the wearing of a mask!!!!
The effect it has had on me now is that I cant tolerate medical events/staff at all....the reception staff at my GP services called me to say blood work is overdue and the panic attack was horrendous I thought I was going to have a heart attack...I got her off the phone by saying am shielding and cant come in...some time later a call directly from the nursing staff and the same thing but I know them well to be kind people and took a deep breath and told them the truth...they offered to come out to the house but again I used the shielding excuse and they left it...


Sounds as if you have every right to feel the way you do and not be trusting of anything medical. The arrogance of Dr's sometimes causes people to have to endure so much that is not necessary and they are too proud to listen and try something different.

I hope you find someone that hears you and are able to get the help you need.


New Here
I had to call my doctor today to put something in my records...nothing more just please update the records any chat that needed to be had has been done with the pharmacy and yet again we got into the FND debate so I asked him...what are my symptoms...I dont know he says it looks like an FND overlay...what even is an overlay is that like when a child has the sniffles with a temp that the sniffles are an overlay to the temp or is the temp an overlay to the sniffles????....I am seriously now not coping and told my doctor but he had nothing to say other than its a good thing you have complained but waiting for the outcome can be stressful...its not so much the outcome but I find myself waiting for the symptoms to arrive of FND...paralysis from the waist down with incontinence or from the neck down with the same of one sided stroke like paralysis...headaches...loss of sight and speech...memory problems and the list goes on and I have none of these issues but all of a sudden the doctors are so determined that I have this FND that am now really struggling. I have today had 4 episodes of dystonia requiring rescue meds...that compares with 10 weeks with no episodes...I have had 3 episodes of laryngospasms that I have managed at home with an extra antihistamine if I catch it quickly enough I dont need an ambulance....I find that I dont want to leave my home in case the FND comes while am out even though I have never had an episode as such like ever...I do have dystonia but I have rescue meds and would take myself to a cafe take the meds have a cuppa sit for the half hour it takes for the meds to kick in then get on with my day...FND has destroyed my life as I dont know what am dealing with and dont know when it will hit or even if it will hit such as it was living with 3 cavernomas that could bleed at any time and dystonia that could blow at any just feeling I dont know where to turn just now and alongside all of this I have the post covid issues playing up again 3 home nebulisers today to clear my lungs...real self pity party for one here...