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Annie 22nd June 2012
I have been diagnosed with FND and like many others have trouble coming to terms with everything that goes with it! Did a 'Google' search and came up with your site, I am finding it extremely interesting, reading real letters from other sufferers is very helpful especially the first letter. I cannot read it all in one go but will re-visit, brilliant site, very helpful
Peter 22nd June 2012
I wanted to share that though it is now a website for hope, it offers no possible chance to be treated, even with the evidence that this is real and does exsits, I cannot even get a neurologist to even look at the pages. I experience all, including the worst of these sypmtoms. After two nerve implants, medicine and 30 years of a long streak of discouragment, I will push on, one day the scientists left to examine me when my time has come, be sure to know, not before it is my time...courge, determination, and faith will have to lead the way.
EDITORS note: I dont agree that the site offers no chance for treatment. The treatment pages describe a process of rehabilitation which will not help everyone but which can make a big difference to many.
David 16th June
Hi, 53 yo male. Military veteran, married for 31 years.Received diagnosis of conversion disorder today at Brigham and Womens hospital in Boston MA. Was seen twice over three months in movement disorder dept.Eighteen months ago had emergency decompression surgery at L4 for Cauda Equina syndrome, 6 weeks later 2nd surgery same location due to disc rupturing future. Gait did not improve. 7 months later a mass was found compressing spinal cord. Another surgery 3 level laminectomy T9-11. I also have 3 discs at T6-8 that were destroyed when I was hit by a car as a teen. Vertebrea have fused over the years, never had surgery . Spine feels lousy and have a very odd gait. Do not take a lot of pain meds. Primarily otc nsaids. Do have access to prescription meds but limit use. I cope with pain. Nurses told me I was the first patient they had seen who came out of spinal surgery and did not request pain meds. I have never been treated for depression, anxiety etc. I told the Dr at Brigham and Womens that I could not accept that I had undergone 3 spinal surgeries for a gait problem and bladder/bowel control and now I was being told it was all in my head. This has cost me my job, I worked for Intel repairing ion implanters. It was a great job but now my life is pretty much screwed.I have lost faith in Drs. I will see a psychiatrist as suggested but be sure that the first words out of my mouth will not be pleasant.I know modern medicine helps some people but there are people like myself who are ruined by the experience.
EDITORS note: this kind of experience after surgery is quite common. David I hope that this website helps you see that, leaving aside your own problems, that functional neurological symptoms are a genuine problem and not 'all in the head' (ie not imagined)
Mary 8th June 2012
any tips for those family/friends/partners who are trying to live with someone who has this? and who says they don't know who you are or what the words they are using actually mean? Is anyone else finding that a partner with this condition is completely self absorbed, unable to empathise or be interested in their other half in any meaningful way? I am in a situation where the person seems prepared to make any excuse in the book to avoid addressing this - is this a normal 'start' to dealing with this? Yours, dazed, confused and jolly sad
Bridget 8th June 2012
I am a mother of 3 and a wife. I had what we call the ‘Big Bang’ July of 2008 which is the start of my quest to find answers. I had difficulty walking, fatigue and balance problems for several weeks leading up to the Big Bang. As I look back though…I have had several random isolated involuntary movements through out my life. They were infrequent, therefore, I was able to ignore it and go about my life. Ignoring it is no longer an option. These involuntary movements are now a part of my life. In the last 4 years I have been to 5 separate hospitals and clinics, have seen more doctors than I can count, taken more tests than a ginny pig ever could imagine, relearned how to walk, given several diagnoses, tried over 10 different medications, and have come to one conclusion… If every Dr is taught the same basic medical philosophies I can go anywhere in the world and get the same result. Therefore, if I want a different result I must somehow change the world. Many are frustrated with the lack of understanding and effective treatment plans. I myself have chosen to channel that frustration into a pro-active approach. I have become part of clinical research studies and have also started a non-profit organization F.N.D. Hope. (fndhope.org) It is the first and only non-profit (for charity) patient ran support group. I would like to welcome any one to please join us as we unite around the world for support and better wellness. fndhope.org
Rita 6th June 2012
My functional neurological symptons started 3 months ago after I had a bad experience of an electric shock while using a passive exercise machine. I lost the power of my hands immediately when the muscle contracted and since then I have continuous tingling and numbness in my arms and experience nerves moving and tingling all over my body. My doctor didnt believe me and told me I was depressed or suffering from menopausal symptons. I was diagnosed by a Neurologist who gave me your website which I found it very informative and great comfort to see I wasnt imagining it. I have an appointment with a Physciatrist Saturday next and hope he can help me. I just couldnt understand my symptons which started immediately after the shock and seems to have disrupted my whole nervous system. The neurologist told me it will get better but will take a long time and gave me your website.
Cristina 31st May 2012
I have been researching my symptoms for years. This website describes all of my symptoms. I feel numbness, tention pain and sensory problems on my left side only.
Rob 8th May 2012
this website is spot on . i had been going in circles until last wednesday. i have hemiplegic migraines as well , and thought some of the issues ive still got were because of it or something had been missed. so with this diagnosis i can move away from not knowing and try to rehabilitate myself over time and over come my disablities caused by this ..
Lily 11th September 2012
After finding this website i instantly burt in to tears, i think its going to be a great help. im 21 and for the past 18 months ive been suffering with really painfull migranes, spaced out and dizziness which is constant and long winded panic attacks. i woke up one day and i couldnt stand due to feeling so dizzy what started off as vertigo is now a mystery. ive had all sorts of medication and physio and they cant seem to work out whats wrong. Finding this website though has given me a few needed ideas to try out to see wwhats going on. Thank you xxx
Anonymous 24th August 2012 from USA
I want to thank you for this wonderful website - it has helped shed some light and gain some understanding for my brother who is suffering with chronic pain. My brother has been struggling with chronic pain for a little over a year visiting multiple doctors and becoming increasingly frustratedand depressed due to getting no answers or solutions. We sat here together and went over the information and he found the most validation of his symptoms and complaints in the information you have provided on complex regional pain and its ties to the malfunctioning of the brain.
Carol 9th August 2012
hi I am carol a 48 year old lady who a few years ago woke up and couldn’t move my legs. i got back to work but over the month i noticed i was getting worse with lots of pain in my left leg and my foot was starting to drag. I went to the doctor who told me i had sciatica and pain like id never known but every test i had came back clear. i thought i was going of my head i got so depressed i wouldnt come out of the house. I was starting to take episodes of child-like behaviour although i dont remember these my son was there with me i couldnt do anything i was so scared. Then i change doctors and after a few months he sent me to see a neurologist and was so glad when he told me that after all those years someone know what i was talking about. He told me i wasn’t going mad and gave me advice. im not better yet but at last there are things i can do to work with. most of all i had people starting to help me. i have a life now thanks to my doctors and my son tom
Sue 8th August 2012
My neurologist told me that I have Functional disorder last night and said to look at this site as it could tell me more than he could As I was driving home I was quite upset thinking all I have been given is a website address but once I looked at this site I was amazed it described all my symptons it could just have been talking about me this is such a relief as I was convinced I had MS. This has given me real hope, what I would like to do now is find a support group in my area or start one if there is not one already.
Lissa 7th August 2012
OMG I'm sat here in tears at the relief of finding a webpage that actually understands and explains what I have been going through for the last year and a half. I was admitted to hospital in May of last year with " a stroke" after I went completely numb down my left side with face droop, and I could'nt remember my name, D.O.B etc which after having a CT scan the Drs told myself and my whole family that I had had a Lacunar Stroke. 4 days after my CT I had an MRI bearing in mind all this time I had been laying helpless in a hospital bed having to be hoisted to get out of bed as I still could'nt move my left side, I was wheeled down to physio and told to get out of the chair and walk and man handled round the ward. I was terrified and in tears but the physio just said see the consultant. Later that day the cons. came and said they could not see any evidence of a stroke go home and get my GP to send me to a psychologist.
Since then I have battled with every professional I could get to see to demand answers as I was just ignored after coming out of the hospital, no follow up, no explanation. Finally after telling my Gp I was suicidal he sent me to a neurologist who sat me down and calmly and sympathetically explained the diagnosis of Functional symptoms. It was a shock but eventually I understood what he was saying the only problem left is my body still thinks I had a stroke and my left hand is still pretty weak and I still walk with a limp but the worse thing is my memory as I still forget things and words and can stutter a bit sometimes and it has left me with IBS. At least I'm not dying or seriously ill but now every time I do feel poorly I tend to put of going to my GP as I feel everytime I go I am being thought of as time wasting. Thank you again for making me feel I am not alone and going mad :)
Tina 8th July 2012
I am a physitherapsit I have specialised in chonic neurological conditions for over 20 years, with an interest in complex conditions and CFS/ME. This web site is one of the most informative and easy to navigate information sources I have come across. I would like to say thank you for the information you have provided and I will be passing on the detaials to my collegues and clients
Maureen 2nd July 2012
After migraine attacks from age 11 now at age 57 i have been suffering from almost daily neurological symtoms for past 10 years including sensory changes on one or both sides, it seems to have evolved from classic migraine to a whole new ball game. I have had 2 MRI scans which showed nothing significant and were classed as normal and been on lots of meds, i am now on just propranolol which does nothing really. I have to deal with this most days of my life, sometimes i worry i am going to have a stroke and get very down. I have not had an attack where i have totally lost control of my muscles it is just a weird numb sort of feeling like when an anaesthitic is wearing off, it affects my little finger, tongue my forearm my calf and sometimes my foot, sometimes separately sometimes altogether (which is the scariest) I would love to correspond with people who know what i am going through, there is nothing worse than thinking you are the only one with some weird disorder or that no-one knows what is wrong with you. After reading this site i have hope ,and that is something i thought i would never have regarding this. Thanks so much whoever is responsible and thanks to everyone who has posted their symptoms/experiences. I am happy to be contacted at any time, i have many more things i would like to discuss, it is difficult to put down in words how bad i have been feeling and how weird some of these symptoms are. The nature of my work does not help either I work from home for a call centre for a very busy organisation
Christine 26th June 2012
I have been searching for answers for 7 and a half years. I have only just found your website and the more I read the more I cried. Finally something I can relate too. My symptoms started with a buzzing sensation in my lower legs. It slowly progressed up my body until I have the sensation all over, 24--7. There is nothing I can take or do to get any relief, my muscles are extremely tender. I can physically do most things, so to doctors, family and friends there's nothing wrong with me. (all in my head). The first 3 years I was very suicidal. I have seen 3 neurologists, been to 6 different GPs, had MRIs, CAT scans, tried accupuncture, been to Naturopath. Spent literally thousands of $$$ of specialists to no avail. I got to the stage where I knew I had to push through the discomfort and pain, keep smiley and generally pretend to all nothing was wrong. But sometimes I hit a brick wall and fall into a deep depressed state, eventually pulling myself out of it and go back smiling!Tomorrow I have a doctors appt where I will attempt to get him to perhaps read some of this web site if not all and hopefully .....hopefully we can work out what the next move will be. Thank you so much
Marggie 22nd June 2012
Well I've just been diagnosed. I truly hope after being told 40 years ago I have multiple sclerosis that I can get my life back. Thanks to this page and stories there is light at the end of the tunnel