The Start Of Functional Movement Disorder Awareness Week

As the start of our awareness week is here again, we need to push our awareness as much as we can,

The more we share, the more people see, the more questions are asked, and the more understanding of our rare movement disorder is known and learnt about.

  

Share, because we care. This disorder can strike anyone down, at any time. We live a life of stress, pushing, and ongoing hardship and upset. 

Things from our pasts that we block out, stress that we pretend hasn’t happened and pushed aside, boxed away. But we all know things can catch you unexpectedly at any time, a flash from the past that upsets you when remembered. I guess it can be just a little like that, but this movement disorder is too hard to explain in any east way.

Read the stories of the people who live with it, read my story as I’ve progressed. Learn and share the information, even mention it in passing the next time you see your Drs. Let’s raise the awareness, of Functional Movement Disorder.

Thank you x

I Wish I Was Invisable


Sometimes I write poetry, to get my hurt and feelings out. 

The painting is also one of my own, as when I got Functional Movement Disorder I found all my artistic side 😊

So I decided to share one of my poems with others who understand.

Just click the link x

https://youtu.be/CZlBY8-UOKYhttps://youtu.be/CZlBY8-UOKY

I hope you liked it 😊

What Is Functional Movement Disorder

Body Movements Pic
I was eventually diagnosed with the “Functional Movement Disorder” part of my problems on 17th May 2012.
I was only given a name of a Dr Jon Stone, and told to Google him to find a site that he did about the disorder. I was given nothing else, nothing at all!
I was in shock with my diagnosis, had no idea what it was that I had. Only had a name to Google, no leaflet or paperwork to give me information, nothing!?
Feeling distraught, upset, mixed up, and extremely distressed following being given my diagnosis. Also just having been informed that there was no treatment they could give me for it, other than for me to go off and read this website. That I would be referred to be seen by a Neuro Psychologist, and have a follow up appointment with my Neuro Consultant in approximately 4 months to check on how I was going as I was an interesting case!

I have now had months to both read up all about my disorder, to digest the
information
and try to adjust my life accordingly as I have become disabled over time.

Other than the one site I was directed to read (found below), there is actually very little else to be found on Functional Movement Disorder. Neither could I find any movement sites that listed Functional Movement Disorder on their movement list. Neither was it listed as Functional Neurological Disorder, as it is of course a Neurological Disorder. There is no where I could find of personal experiences on websites either, rather than just all the medical and technical terms and explanations. There is if course the forum on Dr Jon Stones site, there are also a couple of good Facebook Groups that are great to chat and discuss with other sufferers like yourself. But I thought I might find a website set up somewhere, that gave more personal insight. Rather than just all from a Drs view point who has an interest in the disorder, but not actually go through it.

I wanted more, I wanted a site that just told me exactly what was what. With some patient insight on what this disorder included, and how they deal with it in their life. Or not deal with it, so how they get through the struggles and miss understanding of a little known disorder, that even some of the medical society do not know about or understand either.

So I have set up my own site this site, and called it plain and simple
Functional Movement Disorder

With this site I hope it helps give an insight through the mind of a sufferer. That it gives information in a more simple way to understand, and with the information of the diagnosis process and follow on treatment sessions and help.

The site will grow over time, but more from a patients view point. I will also include any interesting information I find along the way.
Do check out the website links below though, for all the information it offers is extremely valuable and very helpful.

This is information from a website I was directed to by my Consultant Neurologist.
The site has an enormous amount of information, which is invaluable for people with this condition.
I hope it can help others to understand this condition, as much as it has helped me.

Link 1 – http://www.neurosymptoms.org/movement-disorders/

Link 2 – http://www.neurosymptoms.org/symptoms/

___________________________________

Gabapentin Tablets To Blame?

I haven’t been well since changing my tablets to Gabapentin, my increased head attacks and seizures, my breathing problems, and pretty much the rest of my body.

I did a bit of research, and am now questioning the Gabapentin tablets being given to me as a Non Epileptic sufferer. As these tablets seem more aimed at actual epileptics, as even noted in the BNF (British National Formulary) the publication which aims to provide prescribers, pharmacists and other healthcare professionals with sound up-to-date information about the use of medicines. http://www.bnf.org/bnf/index.htm


I have done a full post in the information drop down menu.

I hope this information may be of help to others.

Anaesthetist Appointment Today! :(


Check out my personal daily blog, today I am off to see the anaesthetist.

Not looking forward to any of it 🙁

http://www.dystoniasufferer.com/2013/01/10/appointment-with-the-anaethetist/

Hope you all have a good day folks, and take care of yourselves 🙂

Check out the new leaflets & published information pages

Information is key!20130912-211129.jpg

I have posted on a few leaflets / PDF’s, and some published neurological papers written by Doctors and Consultants.

They are in the drop down “Interesting Medical Papers & Information” tab.

There are some interesting papers if you want to read up on this disorder, and things related to the brain.

I will keep adding to these pages, when I get chance. As I believe sharing information can only help us to understand ourselves more, so therefore we can become more comfortable with our bodies and our movements.

Hope they help some of you 🙂

Published Neurological Papers:
http://www.functionalmovementdisorder.com/interesting-medical-papers-information/information-leaflets/published-neurological-papers/

Information Leaflets:
http://www.functionalmovementdisorder.com/interesting-medical-papers-information/information-leaflets/

Happy reading 🙂

What Is Functional Movement Disorder?


There in lies a very good question!

Functional Movement Disorder, makes a persons body stop functioning at a normal level. It can include many areas of the body movements, or only one area.

It is a very confusing and misunderstood condition, and also seems that it is not even widely known about in the medical profession.
My own initial GP Doctor, had to Google the condition to find out what it was I had been told was my diagnosis. My new GP Doctor does know what the condition is, but did make the big mistake of saying “It’s in the head”. This didn’t go down very well with me, but luckily I already have a good understanding of what this condition entails, the wheres and the whys.

I am quite sure that for a person of lesser knowledge, would immediately jump to the conclusion that it is a “Mental” condition, but don’t worry is isn’t. Although it is to do with the head, it is the brain not the mind that is broken.

In fact it is a break down of the Central Nervous System, which has at some point had a disconnection. Meaning the brain can no longer send or receive signals correctly to or from the body, for the persons movements.

This means that the person can have odd postures, involuntary muscle spasms, unexplained pains, non-epileptics attacks or seizures, and some patients may end up with some form of disability. It seems to mostly effect one side of the body, leaving the side weakened. It can effects some other areas in some patients, there are a few who have dual sided weakness.
There are many conditions that this disorder has, which will be more thoroughly explained in another page.


New Information Added

Check out the new page in the pull down for information, about “Foot Massaging”

Hope it helps some of you 🙂

20130124-174651.jpg

How The Brain Works

This is a great image, to show how our brain works for the different sections of our bodies.

20140320-141931.jpg

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.
___________________________________________________

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.

My Story

I haven’t been at work since Monday 30th of January this year 2012. I had a sudden onset of head spasms, and other body spasms. I have gone downhill fast over the year. January my head spasms started. February my neck kept twisting and jerking sideways. March my legs started to go weak and wouldn’t …

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An Update On Me ;)

I can’t walk anymore without walking sticks, crutches, my wheeled walker or I also now have a mobility scooter. I have funny jerky movements, and can seem to have a tremor at times. My left leg jumps a lot, due to pulling in my abdomen, my hip or the calf muscle all spasming. My neck, …

View page »

4 comments

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  1. Andrea

    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 on the “Helpful Links” page 🙂
    Unfortunately 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 so little 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

    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

    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 😀

  4. Nicola

    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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I Wish I Was Invisable

Sometimes I write poetry, to get my hurt and feelings out.  The painting is also one of my own, as when I got Functional Movement Disorder I found all my artistic side 😊 So I decided to share one of my poems with others who understand. Just click the link x https://youtu.be/CZlBY8-UOKYhttps://youtu.be/CZlBY8-UOKY I hope you …

Read more

Aww I Hurt

Image from Google pictures. I’ve been busy all week, trying to write about my weekend away in London over the Bank Holiday weekend at the end of May. I will get it finished eventually, or maybe break it down into parts to get it posted. As it is all about mobility issues I had, that …

Read more

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