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 ..