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 🙂

Antiphospholipid Blood Test

I was checked for this Antiphospholipid blood test , right at the beginning of my becoming ill. It came back clear, but I fit it in many ways but not all.

For anyone interested in reading more, here is a link to information regarding the testing and how it effects the body’s’ autoimmune system.

http://www.netdoctor.co.uk/diseases/facts/antiphospholipid.htm

It makes for interesting reading, and when I had my test done I was a bit scared as I had no idea what they were looking for.
So if any one is going for this test, this will give you an advance insight.
Apparently it can cause blood clots, therefore giving strokes. Or the clots catching in areas of the body, such as the calf (where I get a lot of pain). Also making the body have weird movements, oh it all sounds so familiar.

So I am lucky (or am I?) as I do not have this as my test showed. So I am stuck with my weird movements, from my Functional Movement Disorder. A neurological disorder effecting my central nervous system.

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! 😀

Battling the bacterial threat to modern medicine

Klebsiella pneumoniae's double cell wall means it is resistant to many antibiotics
Klebsiella pneumoniae’s double cell wall means it is resistant to many antibiotics.

Here is a link to the BBC News health site by Susan Watts Newsnight Science editor, BBC News

http://www.bbc.co.uk/news/health-20554921
Watch Susan Watts’ full report on the fight against drug resistant bacteria.

This story gives a scary insight into how bacteria is growing and evolving, faster than our treatments that are meant care for our bodies!

Having a movement disorder that constantly means our body fights itself, makes our immune system constantly low. Therefore we are at fear of picking up many of the bugs going around all the time. On a bus, a train, a tram, in a taxi, from any hand rail or door handle.

Germs and bacteria are everywhere, just waiting for our hand to collect it. Even washing hands regular does not mean we are fully protected, and there are more and more hand gels being brought out onto the market everyday to fight bacteria.

This story shows that try as we might, the bacteria are beginning to win. If something isn’t done quickly, it will end up that antibiotics become of no use to anyone.

I commend our researchers, and all the time put in from all the medical staff and scientists out there working together to look after us.
Thank you.

New Information Added

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

Hope it helps some of you 🙂

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

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

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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.


Information Pages Set Up


Hi I set up the pages last night for the information, and out lining the symptoms that can come with Functional Movement Disorder.

You can just click on the page links above, or click the links on here below:

Link – Functional Movement Disorder – Starting To Be Explained

Link – What Symptoms Does This Disorder Include?

I hope these information pages help you, your family or carers, or if you are just looking for research.

I will give more definition, and details of what each symptom comes with over the following weeks.


Video Talk On Functional Neurological Movement Disorders

Here is a great video talk, on Functional neurological movement disorders by Dr Jon Stone from Edingburgh.

This is his speciality, and he has done years of research on our disorder. The slides that come with the talk are interesting, and he talks about other videos which are not shown in this talk video but the links are underneath.

http://youtu.be/w4obwKD8JLU

This is Dr Stones website: http://www.neurosymptoms.org

Below are the links to other sites mentioned in the talk:

NBPA: The North British Pain Association:
http://www.nbpa.org.uk

Hysterical Gait:
http://wellcomelibrary.org/player/b16678643#?asi=0&ai=0

Understanding Pain: What to do about it in less than five minutes?
http://youtu.be/4b8oB757DKc

I hope you find this video information as valuable as I do, and as always I will continue to share anything I think is truly valuable and not overload us with information unrelated.

How long did it take you to be diagnosed, from the onset of your symptoms?

How long did it take you to be diagnosed, from the onset of your symptoms?

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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.

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, …

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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 …

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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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