Funktionella och dissociativa neurologiska symptom - en patientguide

Hemi

More Feedback

James (Aged 10) 2009.10.08

Hello, my mum has sent this on to me and I think this is a great help for me to try and under stand what she has to go through and it has also taken some stress off me and helped me know my mum isn't one of a kind. This website has also helped me to understand what happens to her but I still find it hard to deal with the fits as I'm only 10. Thank you so much for making it so clear and understandable. Best regards James (posted with parental permission )

Annette 2009.10.10
I have had some of these symptoms and others for the last 30 plus years and have been to several neurologists none of whome have come up with satisfactory answers or treatments. However, the last one put me onto this web-site and having read it thouroughly twice I feel that I just might have found a way to some more satisfactory answers and hopefully some progress. I have lots more questions and want to know much more. I hope someone can now point me in the right direction to find out more from here.

annette 2009.10.8
Having suffered from 'blackouts' for over twenty years and worsening seizures for the past 7 years I have felt incredibly alone and isolated as no-one understood. I have seen so many different consultants to test for so
many things and all have come back to me saying they cannot find anythingwrong. I have been told it's narcolepsy, epilepsy, it's 'all in my head', or that I was actually making myself do these things. I have been patronised, insulted and ridiculed at times, mostly by medical staff. The past few months I have gone through the Neurology loop again and the consultants this time have been fantastic. I saw a Neuro-psychologist today who recommended that I take a look at this web-site. WOW!!!! I cannot tell you what it feels like to find that after all this time I am not going mad. I can actually tell people I do have a very real problem now instead of hiding behind excuses as to why I can't do things. It is SO important that this sort of credible information is sent to all doctors to educate them rather than fobbing us off with Prozac or just shrugging their shoulders saying there's nothing wrong and
we'll get over it.THANK YOU for giving me hope.

smkareem 2009.10.6
I find your web site very helpful with great knowledge, information and advice. Also I would like to ask if possible to pass this information to every doctor in UK as it seems there are too many doctors totally ignorant about functional weakness

david 2009.9.22

Thank you at last an explanation as to why I have been affected so badly with most of the symptoms described on the welcome page. I realise now that I am not alone and that the medical staff have not been neglecting me. I can now start today to recover and cope with my own problems. Once more thank you for the facts, just what the doctor ordered.

martin 2009.9.21
Thank you so much for your great website! I now know that I'm not crazy or alone. I've been amigraine sufferer since the age of 5 or 6 but recently I've been having symptoms very similar to stroke along with my migraines and sometimes even without the migraine.I've had episodes where I lose the ability to speak, have numbness on my left side (including my face), lockjaw, blurred vision and very violent jerking movements in my left arm,
which I can't control. I also have the persistant feeling that my left arm doesn't belong to me and is somehow foreign to the rest of my body. In fact, that's how I found this site, by googling "limb, doesn't belong."I'm
so glad I'm not the only one. Thank you.

glenys  2009.8.15 18:07
Thank you, Our daughter has been diagnosed with these symptoms and as a family we are finding the website most useful in helping us understand such a complex subject

gavin 2009.7.20
....Today I found out these symptoms have related to dissociative and functional symptoms. For years I have sat in peoples company for social and work purposes, at times seeming like an eternity and jail sentence with all the sensations of seperation, in a surreal environment, numb and detached in silence with no explanation - until now.

For years I have found temporary comfort in exercise, only to have the illusion of this reliable if only temporary relief, being taken away from me the next day by the return and often worsening symptoms,I now know to be a result of the very exercise which often made me feel better.

...thank you for the information you have obviously painstakingly and carefully provided. I would post my history but feel I am only at the start of understanding this condition and how I can move forward.

kathleen mackie 2009.6.21 18:46
3 years ago i had a very bad fracture in my leg .it has healed well says my ortho specialist but im still in a lot of pain .iv been made to beleive that its all in my head .iv just had a appointment and found out im not goin mad .and the pain is real .crp. its a shame that orthopedic doctors dont no about this illness.

steph 2009.6.3 10:07
This is a fantastic website. After reading this I actually feel positive about my symptoms, rather than being made to feel that I am making it all up. Thank you so much.
Please publicise this as I think it would help so many people.

tilly 2009.6.2 21:28
what a fantastic site,im glad i found it,i was diagnosed in november last year after having symptoms for over 2 years and its been so hard to find decent information until now. thankyou

wendy sinclair 2009.6.2 18:33
Very useful and informative website.

mary anderson 2009.6.2 09:31
this is a positive website and informative especially about the dissociation side of the dissorder.

Carlearac 2009.5.29 00:32
Great website, very informative and will certainly promote to people in my field of work.
Has anyone come across functional weakness in both arm and leg on the same side?
If so has a full recovery been made?
Thanks

Rachel Marks 2009.5.23 06:55
This is a great website. I'm so glad i stumbled upon it as it is the first I've found which truly describes my condition exactly. It is helpful and comforting to know there are others out there who are suffering with such debilitating yet vague symptoms. It also helps legitimize the disorder as something real when the best diagnosis I've received is Severe Anxiety Disorder.

Lynn McGarry 2009.5.12 13:59
What a great website. Handy to have saved in my favourites :) x

Dave 2009.5.10 08:20
Great website. At last something that makes sense. Its only taken two years, countless tests and investigations, doctors, neurologists, cardiologists, gastroenterologists......and the explanation lies in a simple and effective website. This needs publicizing. I reckon there are thousands out there suffering at the hands of the ignorant and the uninformed.

Dr John Humphreys 2009.5.5 16:59
as a practising GP I found this website very helpful and expect to suggest it to patients

Gilly 2009.5.2 14:27
Thankyou an excellent website. Very informative and it has helped me to understand the unusual symptoms I experience.

AB 2009.4.22 19:15
 This is one of the most informative, well explained documents that I have read since developing neurological symptoms over 2 years ago. Every neurologist in the country should be made to recommend this website to their undiagnosed patients.

bblace 2009.4.22 10:13
At last a website that is helpful for all of us sufferers who have gone as far as they can medically but still have health problems. Thank you! Have you thought of adding a forum to this site as sometimes it just helps to chat to others that are going through the same health problems as you are?