Tina 20th October 2010
My daughter is 12 years old and has been diagnosed with conversion disorder she has non epileptic seizures twitches, and blackouts. Dr's say it's all related to stress, even though she is a honor roll student has a healthy family life and has not had any traumatic experiences except for this conversion disorder. She is a beautiful, well grouded child. As a mother I don't understand why she has these episodes but I am doing all the research I can to learn more about it. I have a hard time beleaving she has conversion, she does have all the symptoms, but she has no reasoning for the symptoms. I am going to keep fighting to try and figure this whole complex situation out. I do have her in therapy with a Psychologist and she is being treated to cope with stress even though my daughter don't understand what she is stressed about. She is now having her non epileptic seizures while she is sleeping, which don't make sense either. I tell her we are going to beat this and I'm never going to give up until we do.
SM 19th October 2010
I am not sure were to start, nearly four weeks ago I was a full time working mum/wife, happy, no worries (so I am told), we are decorating the house, I went to the shop and when I came back a door that had been removed had fallen and hit me on the side of the head, according to my husband I was fine, bit sore and teary but ok, went away and made dinner, then about an hour later I seemingly didn't know who I was or any of my family, I was slipping in and out of consciouness, eyes rolling, staring into space etc, my hubby phoned for an ambulance, i remained in hospital for nearly two weeks, seemingly having tests done all of which were normal, I seemingly had a couple of episodes in hospital where I went stary, pale, clamy and a bit unresponsive, the neurologist came and saw me for 5 mins the first time and a minute the second and came to the conclusion that it was all in my head, I currently have loss of memory and I am struggling to remember my past, my speech, I sound hoarse, and i struggle to get my words out, although I have everyone telling me that my speech has improved, I am determined to get better, but i know that I am not mad, crazy or making it up, I am seemingly a very strong independent person, and I wish to get back to normal if there is such a thing, my GP who has known me for many many years, is very upset that I have just been left in limbo with no proper explanation as to why this has happened, it took me forever to work out how to use the computer again, but I got there and I am very glad that I have found your site, I would be grateful if you could possibly help or explain to me what I am going through, the Consultant (not the neurologist) and my GP have put it down to head injury/amnesia, I am so desperate for answers and get frustrated with myself when I cant get the words out fast enough, what really angers me is that these Consultants all know me as I work with most of them on a daily basis - so I am told, but I dont remember, so they should know better that i am not the type of person who makes things up, I am angry as I feel that apart from me wanting to get better and my family supporting me and my GP no one else cares, I just want to turn back time, only if it was that simple, I want me and my life back, can you help me please. The neurologist has told my GP that he thinks Ihave functional neurological disorder, my GP is looking into different ways that he can help me and what is best for me, I have been given to follow up appointment for the anyone at the hospital, so what does that say, I keep a diary of names, dates, things I need to do, people I see, things people tell me all in the hope that something will help me to remember, my family keep telling me that it doesnt matter if I dont remember as we can make new memories, i smile and say ok, but know that something deep in me is saying its not enough. I will keep you posted as to how I get on.
Trudy 14th October 2010
Following a road traffic accident in Jan 2009 on my way home from work, I think my body had just about had enough and the only way it could deal with it was the Non epileptic seizures. I remember standing at the sink on the saturday morning and feeling an overwhelming sense that went fron my head to my toesand down I went. The fit was severe with legs and arms failing about.
While my mother-in-law was on the phone for an ambulance my poor husband was on his knees trying to bring me under control. By the time the medics got there took my blood pressure etc said it was probably the effects of the medication and told me to go home and rest and see my own doctor. However i never had a chance to do that cause the early hours of sun morning i fitted again even more severe and this was not going to go away. After the ambulance came they thought it best to take me to the hospital for further tests i had 10 days of hell from one nurse in particular who told me to stop being stupid and wasting their time. I saw a neurologist (10 mins) who told me to go home said it would sort itself out in time,although they did send someone up to talk to me about epilepsy (which frightened me silly).
I have also experienced paralyses of the right hand side, unable to move or speak. Although I could hear and see things i was unable to communicate. I honestly thought i was having a stroke i have never been so frightened but again back to hospital for 7 days more tests and medication and sent off home again with no explanation.
I have been hospitilised on four occasions been given numerous tests and medication seen three different neurologists and only one of them took the time to sit with me for over an hour and make me understand my illness and that it wasnt all in my head or that i was not making them happen. The worst day was when my dad got ill we got to the hospital only to be told he was dying and on came the fits - 55 in total on one day. I was exhausted and an emotional wreck and stayed for ten days by his side but in the end my body couldnt take any more and i had to go home. He died three days later.
There are days when i dont even venture out of the house in case i have a fit but i am persevering and force myself to go as i dont want my illness to control my life but i do have a great husband who takes me everywhere. He's my private taxi cause as you know having a medical condition like this the D.V.L.A will revoke your licence so i have not driven for nearly two years now. I have undergone CBT which i can honestly say has been a great help. This is still ongoing as i type this. I have a fantastic doctor who has supported me throught my illness (she witnessed a severe attack in the surgery) and a loving and helpful family. I have not worked since my accident but have been told the kind of job i did (Debt collection/Credit Control) is not a healthy environment for me now as stress and anxiety are a trigger factor for my fits as is noise, tiredness, heat, car journey,s and crowded/small places.
I now take it a day at a time and hopefully the fits will subside and our quality of life will improve.No one can tell me how long my condition will go on for but thank you for letting me write down my experiences and hopefully it will help me with my recovery process.It has been over 20 months since this started. A good day to me is two fits
Paul Winter 7th September 2010
I found this video of a talk given by Dr. Sean Mackey, assistant professor of anesthesia at the Stanford University Medical Center, about central nervous dysfunction in Fibromyalgia. He talks about some of the research his group has done in looking at abnormalities in the CNS of people with the condition. I thought you might be interested in it as i know you have an interest in what is at the moment termed function illness. It may also be helpful to some of the visitors to your website. http://www.youtube.com/watch?v=jtc2JARVpPw Best Wishes,Paul
Veronica 3rd September 2010
Wow at last a sight that understands not just how the patient feels but can also clarify to the onlokking relative whats happening. After 2 years of fighting medical people who havent understood we find our selves turning a corner of understanding. I can now look forward to a future for my husband and his condition..what ever name its given THANK YOU
Diane 6th August 2010
I am pleased there is a web page with this information, it is very helpful and puts my mind at ease and answers many questions about neurosymptoms. Thank you very much and I appreciate it and all the hard work that has gone into making the webpage. Thank you Dr.Stone and your team for all their help and hard work.
Marie 18th July 2010
I have had the year from hell, with going from a young fit 47 year old. wife,mother, full-time worker, it all started after a trip to mexico May 2009, I had suspected swine flu, as given tamiflu tablets, after taking them for a week, was told I didn't have swine flu after all. I then started with chronic constipation and chronic pain, (although that wasn't unusual for me as I suffer from IBS). I had to be admitted to hospital, as I hadn't been for weeks and I had started to bleed from the back passage, after several tests and visit to hospital,they found nothing, after managing to get my bowel under control with laxative only, I have no sensation of needing to go at all, if it doesn't happen within 3 days, i general have to sit on the loo until it happens, ( doctor wanted me to have a bag fit but i didn't want too). It has changed my life, I have to plan every thing around the toilet. then I started to drag my left leg, pain in my left hip was getting unbearable now, after being referred to yet another doctor, more tests, and given a walking stick to stop me falling over, I then had no voluntary movement in my left leg, my right leg was starting to go that way too!
Then one friday morning I awake with a small tremor, as the day went on the tremor became uncontrollable and very scary, went to A&E was told nothing they could do, as I was awaiting appointment to see a neuro doctor, since then I have seen two neuro consultants who have diagnose me with functional neurological disorder. Finally an answer! A treatment even, But not really, phyiso doesn't seem to help, the more i do the worse the pain, I have to use a wheelchair outside now, as I am unable to manage, if it wasnt for my husband and family I don't know how I would cope every day, I am a very positive person. and have been all the way through this journey, there isn't much help out their for this terrible condition, that leave you very frustrated and angry as to why or how it happens, but thankfully my family and friends have and are brilliant, and keep me going, I also going to lose my job over the next few weeks, as I am unable to go back due to my condition, I have did enjoy my work for the same company for over 20 years, but to me its the last straw, in my uncontrollable life at the moment. But be positive they keep saying to me, on a regular basis, but its bloody hard. But thanks again for the website, the fact that I am not alone does give me some comfort a least.
cfurze 19th July 2010
This is a brilliant website; have referred the team treating me to it so they can improve the way they explain things to patients. It is the first time I have read or heard a calm and comprehensive explanation of what "functional" means and how it does not mean "you are making it up" or "there is nothing wrong with you".
Lisa 31st May 2010
I'm so glad I happened upon this site-how very informative and reasuring. My daughter has CRPS and we've encountered many of the negative opinions towards this condition that you've clearly described. This should be compulsory reading for any one who has dealings with chronic pain conditions.
Andy 5th November 2010
In January 2009, I stopped at a zebra crossing, unfortunately the car behind me did not and he rammed my car from behind causing many thousands of pounds damage to my vehicle. Ironically i was on my way to my last appointment with my physiotherapist who had been treating a previous injury on my left side. At the time of the accident i truly felt no pain except i did feel a burning hot kind of sensation in my neck. the physiotherapist said that we should abonden todays session and re-arrange it for a few days later, Almost the following day slight pain started and continued to increase in intensity and area, spreading up into my head and down my right arm. Over the following few weeks the pain got worse and worse, over the counter painkillers had no effect, my Dr put me on a course of presciption pain killers, I still lived inpain that was getting worse and worse, I had been to muscular skelotal specialist who, after i had left, phoned my Dr, called me at home, informing me that they suspected bleeding in the Brain, and that an ambulance was already on its way to get me hospital without delay, Fortunately I got the 'all clear' following a ct scan. I saw a specialist who diagnosed severe whiplash, which sounded to me pretty normal given the accident.From the time of the accident in Jan to mid year i became more and more enveloped in pain and difficulties moving. My Dr had tried several pain relief drugs none of which seemed to help, Morphine became the only slightly effective drug and I live on about 180mg each day both as MST and Oramorph. I continued to deteriate throughout 2009, losing my fight against the pain and exhaustion, It got to the point that I lost use of most of my right side, particulary my leg, neck, groin, etc etc including devastation headaches. I could no longer bear my weight and ended up bed wridden, anxious, depressed, Life was not being kind to us, my wifehad been looking after her Mum who had severe dementia, sadly my wife could not take care of both of us, her mum was admitted into a care home, that was a hard decision.By October 2009 I had no energy, i was unable to stand I was bed wridden and had a care package which involoved specialist care 4 times each day every day. I lost my appetite, my sense of smell and tast and about 45lb the medication continued to grow into hundred of tablets each week. It was very hard to see a way out. At the time of the accident the local bodyshop took on the repairs and within the docs i signed was one allowing them to set up a claim for personal injury, I have never considered sueing any one, for anything. What i did not realise was the small print basically stated that ifi stopped the process then i would have to pay the lawyers all their costs to date. Surprisingley I am not rich certainly since i lost my income, I have not been able to work since the accident and i just seem to be getting dragged down by it, what does not help is my nuerologist seeminlg prefers to infer that it is all in the head.I really feel at the end of my tether, trapped into some form of court case that i never wanted. It seems that severe whiplash could never have been the cause either wholely of partially, in truth i really dont care I just want my live back.As it stands now I have my right leg that is hard to see as part of me, it feels very little but acuses me huge pain and i have no control of it, I am told it is internally rotated and face the wrong way, extreme pain in my groin area, murderous headaches behind my right eye, spasms, shakes, etc my neck is in the worst kind of pain i have, i am incontinent , my memory shot particularly short term. I am unable to remain consious for more than a few hours each day. I am depressed and maybey that is what is causing the problem but I do not understand how it could do some of the stuff, for instance I sweat down my right side, not the left, My nails do not grow on the right side, I have bare areas on my right leg the hair will not grow. I just do not know what will happen next. I do have awonderful wife who is my rock my friend and my Luvver. She is without doubt a true angel.I don't actually want any sympathy I just want to get back to normally, intensive residential re-habilitation has not helped. I really feel lostbecause of the neagative feedback i get from the proffesionals i have turned to.I will stop now, its taken me three days to write this, and i am worn out.
Click on the drop down pages on "Feedback" for more feedback