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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.
John 30th May 2010
thankyou for the informative nature of the website. I still fell very confused by all of this and still have shaking bouts some involuntary jerking and few blackouts ,my moods remain even
Hayley 26th May 2010
What an extraordinary website, sadly i have encountered ALL of which is mentioned on the first page in Symptoms list.Have experienced this now for 6months and am on an anti -depressant called IMIPRAMINE . My sensations continue continuosly but have died down a little since 9weeks of pills. Lorazapam helps me with the severe anxiety i get when the 2 hour long attacks happen. i was in so much agony i for so long, i had very suicidal thoughts because i thought that my life was over anyway ,because of the feeling of going mad! So for all you people out there if you are reading, help is out there but one must rule out all other factors first, which is the hard bit. Neurologist and psychiatric consultant is the way to go forward. good luck and at all times try stay calm!
"Vulnerable" 20th May 2010
I have had a year of hell, going to different neurologists, have numerous tests done for symptoms as listed:intermittent left facial hemispasm, loss of balance to the left, spasm of left leg, weakness of left arm, weakness right arm resolved(on it's own), swallowing difficulty resolved(on it's own), intermittent spastic gait, intermittent blurred vision, intermittent occipital headaches. Only abnormality found was cervical stenosis on MRI with c5 bulging disc, no spinal compression noted. I saw another neurologist that suggested I have conversion disorder. I have been looking for a diagnosis but that one was hard to swallow. Especially since I have seen counselors, psychiatrists my whole adult life, reviewing the ugliness of my childhood, yada yada. So I didn't feel I had anything left repressed so to speak. This information has made me more open minded to the scheduled psych appt. If this is truly the diagnosis then there is hope for me to return to my passion of horseback riding, and the job I so love-nursing. I will post as to whether I get better or not. At this point, I will embrace whatever treatments necessary to give me my life back.
Hannah 28th Jan 2010
What a great website!I have just been diagnosed with a Functional Movement Disorder. Ironically I started to recover before I got the diagnosis but I'm still glad I found out about what I have, and that there are other people out there with the same symptoms! Mine started with twitches in my back, and progressed to muscle spasms which pulled my head and shoulders forward.
At its worst it pulled my head down to my waist. I also had a shaking right hand. The spasms were set off my contact (especially to hands and feet) and loud noises like Fireworks. I also had two episodes where I had flailing arms, like I was playing the drums. I've been lucky in that I haven't had any pain, but it has been very debilitating and I've had 3.5 months off work, and for a month of that time didn't really leave my flat. My Gp and Professor of Neurology could not tell me what was wrong, which was very scary. In the end it was a Neuropsychiatrist who gave me the diagnosis. I have found that a combination of alternative treatments and counselling has really been invaluable. I've discovered that I hold tension in my muscles and skeleton which has played a factor in my problems. So, a combination of physical and emotional treatments has really worked. Of course I have paid for all of this myself, if I'd been diagnosed earlier the hospital would have given my occupational therapy, psychaitry and physio-therapy but by the time they told me what was wrong I had sorted myself out by other means (as above). This website is fab - it answers all my questions (is it my fault etc!) and makes me feel like I am not alone. Keep up the good work. More info at www.bourneblogs.blogspot.com
