Living With Doubt

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Here is a quote to boost you up!

Self confidence is not the absence of self doubt.
It’s being able to live with your doubt as your companion but not as your master.

I guess that makes some sense, but I am still learning.
My learning curve looks like it may be a long one!

Have a good day folks, and a Very Merry Christmas! ๐Ÿ˜€

Check out the new leaflets & published information pages

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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 ๐Ÿ™‚

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 ๐Ÿ™‚

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/

___________________________________

Nominated For – National Diversity Awards 2015!

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We have been nominated for the very prestigious, National Diversity Awards 2015. For our Functional Movement Disorder Community Group, in the Disabled section.

Yes you read that right, I was very surprised myself. Though we are an online group, Functional Movement Disorder Page, and website, we can make a massive impact to society all around the world.

There are still a couple of days left to nominate, if you wish here is the link – https://nominate.nationaldiversityawards.co.uk/Nominate/Endorse/26876?name=Functional%20movement%20disorder

As Functional Movement Disorder is such a rare disorder, it is harder for us to get people including family and friends, to understand it is real and what comes with it.

Even being put forward and nominated for the award, is yet another awareness in itself!

With our rare disorder we may only add up as sufferers in the hundreds, not the thousands, or the millions like some other movement disorders. But we are here, and we are being heard!!!

I am very proud of us all, how open we can be, and sharing our stories and expressing what we go through.

So good luck to us all, and keep raising more much needed awareness of :

Functional Movement Disorder

We are here! X

How long have you / or the person you care for, had Functional Movement Disorder?

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It’s Our Functional Movement Disorder Awareness Week!ย 

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During our week of Functional Movement Disorder Awareness, I would like to look at other things that may be part of the reason why we have this disorder.

Anxiety, Depression, IBS (irritable bowel disease), all of which I myself suffer with, can impact upon the gut. It plays a big part in our daily lives.

You may have seen, or heard before, about how the food we eat which goes into our gut can effect us. What happens in the workings of the gut, can have a connection to the brain. Changing the way the brain works, and also giving reasons behind brain inflammation or brain degeneration through the gut-brain connection.

I’ve been looking at this for a while, and I have been taking those little probiotic drinks for years, to put good bacteria into my stomach. I have a lot of stomach problems, and the drinks do seem to help a little. 

Here is a link to a study being done, relating to the gut and its relation to Multiple Sclerosis. As you know, we suffer many of the same symptoms as MS, so surely this could be a related factor to our disorder as well.

Take a look, and decide for yourself.

http://www.psypost.org/2016/05/exploring-gut-brain-connection-insights-multiple-sclerosis-42704

What are your thoughts on this, do you have problems like this too?

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 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
* Functional Neurological Dissociative Disorder
* Functional Neurological 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.


Did You Know??

The Brain is made up of a Hundred Billion Neurons?

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All those neurons fire chemical responses to one another, sending requests for all our body movements.

The brain is the most fascinating part of the body, the one part we will probably never ever fully understand.

Functional Movement Disorder, is one of the one things that may never be understood.
Why the brain can suddenly have a disconnection in its central nervous system, why it no longer sends the brain signals properly anymore from one set of neurons.

How can those one set out of the hundred billion, ever be found? Ever be fixed?

Simple answer, they cannot. The brain is a wonderful thing though which has a life and existence unknown to us, as it can find its own way of repairing or going around and fixing certain problems all on its own.
But only for certain brain problems?

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This is what is called Brain Plasticity, where the brain in effect rewires itself.
This refers to changes in the neural pathways and synapses, which can have cellular changes and makes new brain pathways for the brain to try to learn to work again.

But hey, this is all rather involved! So we will talk about this another time.
Or you can check it out yourself in the meantime ๐Ÿ™‚

New Information Added

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

Hope it helps some of you ๐Ÿ™‚

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Never a Give Up!

 
Check out my new post on my blog at:

www.dystoniasufferer.com

Where I talk about not giving up on fighting to have all your symptoms checked, and not to let the Drs tell you everything is Functional and leave you to just live with the problems.

If you believe there is definitely something wrong, and you have not had any test or scan for the illness. Then push forward, until you get checked because you just never know unless it’s checked out.

I know, I’ve been fighting for my different symptoms for years because yes even I do not believe everything I have is Functional.

They may continue to say that my diagnosed Dystonia is now suddenly probably Functional Dystonia! 

But suddenly at last, though I’ve been having Botox injections since a Feb 2010 for my Blepharospasm and Hemifacial Spasms, I eventually got checked by my Neuro Consultant and got the go ahead to have Botox in my neck! This was at my last appointment, and it made such an improvement to my head, and my neck was holding up better. Though I am ready for my next injections now!

They may continue to say my seizures are Non Epileptic, though whilst having an eye test by my optician last week say he thought I had Epilepsy from the way I reacted to the test makes me wonder. Along with the radiographer who believed I was an epileptic, after having a seizure during my head and neck MRI scans last year, my partner said I am told I have NEAD but she said that was not like a non epileptic! So I don’t think you always need the electrical EEG test, to diagnose epilepsy if the signs are all there. It is annoying that we are left with the NEAD diagnosis, just because it can’t be caught on screen.

But they can no longer keep saying my back pain, leg, feet, arm and hand pains, or the pins and needles and numbness are Functional. Now I have a printed out report of my MRI scan, plus a copy of the letter referring me to be seen by a Neurosurgeon. I have proof it’s not all Functional, it makes me glad in one way but sad on the other hand as I have some serious back problems.

You can read fully in my blog post, about all my newly found out back problems. Just click the link at the top of the page.

Thanks as always for reading folks, and take care of yourself and your family x

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 …

View page »

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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 ๐Ÿ™‚
    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 ๐Ÿ™‚

  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 ๐Ÿ˜€

  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! ๐Ÿ™‚ xx

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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 …

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FMD What’s the difference between the overlapping movement disorders?ย 

Functional Movement Disorder has many overlapping symptoms of other movement disorders, such as Dystonia, MS, Parkinson’s, Lyme Disease, Lupus, Chorea, and many, many other movement disorders.  The difference being that whilst these others are an organic brain disorder, then some may possibly shorten life. The functional movement disorder is not, it is classed as psychological …

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