Hi my name is MJ and i spoke to a member of your team on facebook messenger the other night , and due to my functional neurological disorder – fnd for short, i have severe speech problems , so i am emailing over a brief summary of whats been going on for me with the NHS and having concerns that my fnd may of been caused by medication, especially after watching your video for your awareness day that was in December 2018
Where do i start , always from a child (i am 44 now) i always had sadness and not quite fitting in and was severely bullied at home and at school , so by the age of 16 i found myself in a abusive relationship and had my first child at 17 by the time i was 20 after the birth of my second child i was on antidepressants not sure which ones they were like red smarties and over the years following i was on various antidepressants Prozac or Citalopram were the drs favourite ones and to be honest they never did nothing apart from cause massive weight gain and lethargy.
Then in a bout 2003/4 after trying to turn my life around to be healthier and already losing about 7 stone in weight but then coming to a standstill weight wise i heard about these tablets that drs were prescribing called Sibutramine or Reductil , so i asked the dr about these and she put me on the highest dose and i agreed to visit dr regulary as they can cause heart problems , but i was so desperate to lose the weight and fit in (be normal , these days i realise it doesn’t matter your size and everyone has their own level of normal) so i started taking these tablets and wow at last something that worked.
It was like my brain had been rewired in the space of an hour of taking the first one , i could think clearly i had so much energy , it was like “yey something at last that kinda makes me feel normal and fitting in”, needless to say i continued with these tablets for several years, then come 2005/6 when i was coming off the tablets as i found out 12 months should’ve been the maximum time i should’ve been taking them there was stress going on surrounding my daughter and i started getting these attacks which the drs at the time just said it was anxiety attacks that mimicked a stroke which i now know to be fnd and i had many visits to A&E in the early days of the attacks and being doped up on Diazepam and anti depressants , eventually i seen another gp at the surgery and he said it wasnt right and referred me to neurology at Lydney outpatients this was in 2006.
The day i met the neurologist i wasn’t having attacks so i had to rely on explaining to him and he agreed to send me for a MRI of my brain, and a test where they wire your head up and flash lights in your eyes i think its called an EEG, then i went back to Lydney outpatients sometime later for results, i walked into the neurologists room when i was called and the neurologist looking down messing with something not really paying attention muttered actually there is something wrong then looked up and said sorry wrong person.
He had no notes or computers files open in front of him, really at the time i should’ve questioned him but i didn’t as i just thought it must be me again my body over reacting and doing strange things , so I went on my way continuing of going back and forth to gps and mental health services for various anti depressants and therapies , like cbt and counselling, art therapy etc … and tablets over the years ranged from Citalopram to Prozac to Veneflaxine to Mirtazipine , some in liquid form some tablets these spanned over many years.
I soon learnt what mostly the triggers were for these attacks it seemed anything that would raise my heart rate , so things like stress , exercise , etc… so I just tried to avoid these these things as much as I could but sometimes the attacks would happen for no reason at all , also over the years I sought private therapy through NLP, EFT, plus I socialised through spiritual groups and learning techniques like meditation and other forms of healing the therapies all helped me one way or another but never made a difference to attacks.
In 2008 I saw my gp again about my weight as it was creeping back on, and she referred me for a gastric band which I had placed in 2010 , which was helping manage weight etc… then in 2013 I became very unwell with the band I won’t go into the gory details but after not being able to eat or drink for 3 months the drs decided to refer me back to the ones who fitted the band , and the drs gave me Lanseroprazole which helped to keep down very small amounts of soft food like runny mash or watery ready break , and the people at south mead who originally fitted it did a swallow X-ray and it turned out my stomach had pushed through the band , so I was given the option of having it corrected or removed , so I agreed to have it corrected as at the time I really didn’t want to be without it.
Apparently when it was corrected there was several hernias and loads of ulcers in or around my stomach , I was told it would never be able to be tightened again but that was ok as at the time as it was like a security blanket for me what with my ongoing issues with weight, so life moved on and in about 2014/15 I saw a neurologist again as I had been back to gp so fed up of attacks and really beginning to question the anxiety thing especially as I had worked hard with loads of therapies and adopting a spiritual attitude to life and having a good social life with some really good friends who accepted me for me.
I saw a different neurologist and he wanted to try and witness an attack so he called a nurse into the room and asked me to undress to my underwear and tested my reflexes etc by this time I was pretty nervous so I began to shake a bit , so he thought that was an attack and said it was a functional movement disorder and gave me a web address to look at he ordered some bloods to be done , several months later I still hadn’t heard nothing so I rang up about bloods and the secretary said they were clear , so I continued plodding on life the best I could finding part time work etc… more tablets from the drs etc…
In 2016 I had the band removed as problems were beginning to occur again and I had just come to the conclusion I would rather be fat and happy than put my body through anymore torture plus the stress on my family In 2017 things started going downhill fast , the attacks were getting more frequent and more random.
Then in March the Friday before mother’s day so I wasn’t stressed and I was looking forward to being pampered and a day off from cooking and housework etc… as I have now got 5 children , I had an attack in the evening that basically hadn’t stopped yet 2 years on , so when it started I kept telling myself it would pass and made visits to out of hour gps who gave me beta blockers which done no good so I stopped them and my regular gp gave me Lorazepam and Zopliclone which really altered my thoughts and mood and by April I took a massive overdose of them which I am ashamed of but my mind was so scrambled and I was so off my face on them but not making no difference to the ongoing attack.
A group of mental health people visited my home on the following Monday which I now know was a assessment but wasn’t told at the time or received any copies of assessments but I will go more into that later as a lot has came to light about that more recently.
By May I had an appointment with the neurologist called Dr M__ S______ and before me and my partner had chance to sit down she blurted out your in a violent relationship aren’t you which is not true yes over 20 years ago I was but the man I am with now is such a good man , I tried to explain to her with my speech problems that this was not true , she just looked at my partner and said well you better not be , she did some standard neurological tests like reflexes although very difficult due to my movement and all over tremors and agreed to have me in as a inpatient ASAP for assessments and tests etc …and she prescribed pregabalin but after a week or so of taking it I recognised the feelings I had previously from meds that I stopped them and in a couple of days although still feeling awful the real horrible feelings went away.
In June I was called on a Friday night and asked if I could come in straight away as a bed had come free , so I did as the attack was still ongoing and really getting me down , it wasn’t a good experience at all , especially due to my speech problems , I even had a nurse taking the mickey out of my speech , the beds were set up weird and I wasn’t allowed to pull the curtains around me for privacy , I saw a physio once or twice and a health phsycologist once , Dr S______ saw me once or twice and one day she brought a colleague around with her with some student drs , he got me to do some things that I found really difficult like raise arms , then he said fnd we get a video done for dr S____ to go through with you to show you it’s fnd , then one of the students said to him how do you know it’s fnd and he grabbed my head and I started to feel electric shocks all through my body and making this weird humming buzzing noise then all of the drs went off to chat and go onto next patient , so great he started a new symptom of vile electric shocks in my body which I get daily now along with everything else.
So I was discharged and invited back the following week for the video to be made , the following week my partner booked yet another day off work and took me up for the video , we was left waiting for hours as somebody had cancelled it but eventually they got the video people to come over , they got me to sign a folded over peice of paper supposedly to say it was not for public use but I do question that now , the video was done which I found very stressful due to not being able to communicate and feeling unheard at one stage he rubbed his hand on my spine and I flinched with pain and he said in a loud voice for the camera oh I’m sorry that tickled I was so glad when it was over it was so humiliating, a few weeks later I had a appointment with Dr S___ , so again another day off for my partner but we thought we was going to go through video , but it wasn’t , it was more or less a discharge appointment.
My partner asked about the video and she was very awkward about it and said oh yes definitely fnd and quickly changed the subject , so god know what happened to that video , so great discharged or so I thought I felt so alone so I turned to the internet and researched fnd and found someone talking about the Rosa Burden centre in Bristol and how they specialised in fnd , so I emailed Dr S____ through pals to ask wether she could refer me and she did ,so in the August I met Dr E__ M___ a neurologist from the Rosa burden centre and by the beginning of September I was a inpatient there on a four week rehab programme ,
I had some speech therapy there and physio and to input it was good there and great improvement was made there , towards the end you are set a task to walk to local Lidl ( about a 10 minute walk for average person ) but when I did it , it took me nearly 3hours as all symptoms returned but I managed to get back and just sit in a vegetive state for some hours after and pull myself out of it , so upon leaving they advised me to get a self referral for CBT, so I did even though it didn’t help things before , within weeks all of my symptoms were back worse and by the November I had to purchase a wheelchair for outings and by the February 2018 I was fully mute.
I went to gp who sent me to A&E but I ended up leaving because the one Dr was so rude and shouting at me , my partner had to step in and tell him to pack it up , but by this time I was so distressed I just got my partner to get my wheelchair to take me home , and the Dr on the way out said quite sarcastically yes go to Bristol they will sort you they are much better , why he said that I don’t know there was no need of his attitude , anyway I went to se Dr M___ a few weeks later for a outpatient review ,and she did her best to get me speech therapy locally and she reassured me not to worry or blame myself relapse is common in fnd , so by April/May 18 someone from mental health visited and realised I was mute so they then had to think as talking therapy wasn’t going to obviously work , so when they went I emailed them and asked if a psychiatrist could see me as I just had gotten to the point where I think I had gone nuts , so off to a psychiatrist I was referred I met him 3 or 4 times each time he was very rude and very impatient with my speech difficulties and just kept on wanting to give me tablets the first lot was Sertraline well I didn’t even collect prescription and the next time it was a very high dose of Prozac
I collected the prescription but never took them as he said to me in the appointment if I didn’t have tablets there was nothing he could do even though I was explains that meds were having a negative effect on me even paracetamol or anti histamines have a negative impact these days , so the next appointment that was like 6 minutes long he wasn’t happy because I wasn’t taking tablets and he referred me to psycologist L__ M___, I met her several times and she seemed to get it until I received a report in the post where she had written that my man had committed suicide , which when I emailed her to ask her where this had come from as it was distressing to read and not true she wrote back to me saying she got it wrong it was my grandad which again was not true , she wished me all the best for the future in the letter and that was the last I heard from her.
In that time as well I seen the speech therapist who was stumped after 5 sessions what to do, and Dr S___ had sent a random appointment so I went even though I thought I was discharged from her even though i was a lot worse and fully mute she didn’t seem bothered or even examine me and I ended up in tears by the end of the appointment and all she said to my son who had accompanied me was it does them good to let it out and patted me on the back.
When the report came through the lies that was wrote in there I just broke down blaming myself again , so a few more waste of time gp appointments etc … after but I won’t go into all of it as I can appreciate I’ve gone on loads already.
February 2019 I had another appointment with Dr M___ who has now discharged me , and I’m stuck at home housebound , more or less mute and tons of other symptoms , feeling very lost and alone and not knowing where to turn.
It’s surprising how much we take things like talking for granted but when it goes you soon realise what an important function it is , I just don’t understand why I’ve been lied about ? Diagnosis have been made on my past traumas in life are things being covered up especially as my symptoms now match MS or Parkinson’s or other neurological conditions but no recent scans have been done to rule them out ?
How can they waste NHS money on prescriptions and so called therapies when a true diagnosis has not been made ? Because the way I see it how can you begin to fix something if you don’t know what is wrong as fnd is just a umbrella diagnosis and the leading specialists in fnd say it is unusual for fnd to be the soul problem.
Did the years of antidepressants and those diet pills mess my brain signals up ? Especially as Reductil was designed to surpress the appetite through messing with the brain signals , I tried to help the health professionals the best I could by typing up everything prior to an appointment as I can appreciate it was hard for them with my speech problems and the last thing I ever wanted to be was a nuisance or a burden.
Thank you for taking the time to read this there’s probably loads more I could’ve added but I can appreciate this is loads already and I would really appreciate any support or advice you could offer many thanks MJ.