Welcome

Welcome to my site, I am a “Functional Movement Disorder” Sufferer.

I decided to set up this site to share any information and knowledge I have found, about this “very little known about” disorder.

*PLEASE NOTE THAT THIS SITE IS ALL MY OWN THOUGHTS AND INFORMATION I HAVE FOUND, PUT TOGETHER TO HELP OTHERS IN THEIR SEARCH FOR ANSWERS THE SAME AS MYSELF.

This site will grow slowly, as I gather together all the information I have already found. Along with the new information I find in my continued research, which I will put on in time.
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Through researching for information on this disorder for myself, I found there to be very little out there to find.
I looked on the worldwide web, where there is information about what the movement conditions for this disorder are. Only I found nothing about the diagnosis process, or the following process of treatment and what is involved. What we as patients can expect to go through, and the walls that we constantly come up against.

The piles of forms and paperwork that we have to fill in, if we need to make claims from insurance companies, for DLA, for ESA, right through to applying for Blue Badges for disability parking, or concessionary passes etc.

The appointments we have to go through, and the sucession of follow up appointments. The different Doctors and Consultants we are required to see, and the tests we have to go through. Firstly to get to a diagnosis, then the following assessments for any claims we make. The refusals that you may have, and the following continued push to prove that your claim is your right. The ongoing battle against both your body fighting itself, and the battle to keep going through all the closed doors.
The total and utter resignation you may feel many a time, and the ongoing tiredness and fatigue.

I also trawled to a lot of bookshops, only to find that even the largest bookstores did not have any books on this condition. I even went to a main University bookstore, but to no avail.
I was also very surprised to find that it is not listed on the lists of Neurological Disorders on the Movement Disorder sites that I did find.

Interestingly, there seems to be a selection of names for the same disorder:

* Functional Movement Disorder
* Functional Neurological Disorder
* Functional Dissociative Disorder
* Dissociative Disorder
* Conversion Disorder
* Functional Neurological Dissociative Disorder
* Functional Neurological Movement Disorder
* Psychogenic Movement Disorder
* Functional (Psychogenic) Movement Disorder

All of the above diagnosis’ are in fact the same disorder, which can lead to confusion when left to look for information about the condition you have just been diagnosed with.

I hope that with shared knowledge, we can get this disorder more well-known about and so making the struggle for sufferers less, along with helping their families and carers to gain an understanding too.

Please feel free to get involved. You can comment, or you can contact me by email using the contact form.
Thank you.


4 comments for “Welcome

  1. Andrea
    February 21, 2013 at 7:52 pm

    Hi Julia yes it was the same one I was pointed to by my Neurology Consultant as well. It has a wealth of information all about the different symptoms and that come with this disorder.
    I have linked to it somewhere in one of my posts :)
    U fortunately what I find it doesn’t do is go further, to give the understanding. To fill out the picture and consequences this disorder brings with it. I wanted more, to know the why and how. To find reasons, and information more than just on a medical level from one Dr who has an interest in the disorder. In fact, I was and still am dumbfounded that so few Drs have an interest in the disorder or know much about it.
    My website is the journey from a patients view point, the diagnosis and time, years it can take. Through to the eventual start of treatment, the forms of treatment, and hopefully the outcomes that patients can look to in the future.
    I have been rather ill lately so I know my site is limited, but as many sites they take time to build and I hope it will get there eventually. With more information of the treatment and psychological journey, along with other interesting information I find that I feel may be of interest to share.
    I hope you find the site of some use to yourself also.
    Thank you for your comment :)

  2. Julia
    February 6, 2013 at 8:11 am

    Hey, have you had a look at neurosymptoms.org? It’s a website by a movement consultant neurologist and I found that very useful. My neurologist pointed me in the direction of it when he diagnosed me x

  3. Andrea
    November 25, 2012 at 12:39 pm

    Hi Nicola, I am so glad my site is helping you. Although I do need to just say, that I am like you a sufferer. Everything I put on this site is from my research and personal experience, I am not a medical person.
    I set this site up because there is little information for us to find, and I wanted to explain our disorder in as easy a way as I can. Without all the medical terms that can be hard to understand, and I want to help others like me.
    We as patients with this disorder, start to become specialists in it by going through it and all the information we find along our journey. We end up knowing more than our local doctors, but we are not doctors just sufferers that begin to know all about our disorder.
    I hope your appointment goes well, and that your day is a good one.
    Thanks for your lovely comment :D

  4. Nicola
    November 24, 2012 at 10:13 pm

    Fab site Andrea! You site is so good I’m taking a print out to my Gp this week of all the symptoms. He’s very understanding but he’s learning about Fnd like I am. I look forward to hearing of any updates you have & I will definitely let you know if any treatment I have seems to help & of news I may find through my investigations into this mad, mad condition! :-) xx

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