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.

Functional Movement Disorder

 

   

  This disorder has such a diverse mix of symptoms, that it is incredibly hard to label it properly. 

Functional movement disorder, functional disorder, neurological disorder, conversion disorder, functional neurological disorder, movement disorder, involuntary muscle spasms, muscle spasms, pain, chronic pain disorder, chronic pain, non epileptic attack disorder, nead, fmd, fnd, non epileptic siezures, nes, epilepsy, epileptic seizures, seizures, memory loss, loss of co-ordination, balance problems, gait problems, chorea, ms, parkinsons, dystonia, functional dystonia, focal dystonia, blepharospasm, eye problems, facial spasms, jaw spasms, cervical dystonia, cd, neck spasms, muscle twiisting,  disability, disabilities, disabled, paralysis, partial paralysis, sleep paralysis, sleep aponea, sleep disorder, back pain, myoclonus spasms, and more!

There are so many symptoms, so many names, how can it all be labelled under one Disorder?

I believe we should be treated for each individual symptom, and the clumped together disorder name label actually taken away! 

That way patients will get treated for each symptom, rather than some that are left with just a label over their head and doctors who have no clue how to treat them.

I honestly believe there are way too many symptoms, just to be all put under the same label of Functional Disorder!

Thanks as always for reading :) 

 

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Date of UK driving licence law announced

Information
Friday 8 March is the date when the new driving regulations for people with epilepsy will become law.

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The changes are on the Epilepsy website, see the link below for all further information:

http://www.epilepsy.org.uk/news/news/date-uk-driving-licence-law-announced

This is very important information for any drivers, please check it out.

I hope this information helps :)

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.


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 :)

Nominated For – National Diversity Awards 2015!

image

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

My Story

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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 hold my body up.

I had all sorts of problems, I have been in A&E, and in Acute Assessment Unit where they diagnosed me with Chronic Cervical Dystonia, Involuntary Movements, Vertigo and Tinnitus!

I started with Non-Epileptic Attacks at the start of April.

By the end of April I started having Non-Epileptic Seizures. They pull my face, I look like I’ve had a stroke, I cannot talk straight away after, and these can make me paralysed in all my limbs for hours at a time.

I am now registered disabled, and have to use walking sticks to even get around the house. Outside I use my three wheeled walker or crutches, I look and feel like an old woman. I also have a wheelchair for when I go paralysed for my partner to put me in.

I was diagnosed on 17th May with Functional Movement Disorder, and have recently been told I will now have it for life.

My diagnosis had been wrong! That in the Acute Assessment Unit the Doctor had diagnosed me wrongly, it was all my body starting to Mis-Function. All part and parcel of it, so many different symptoms, but only one Disorder!

Work has eventually terminated my employment as of 20th December this month, so I will be officially unemployed.

I can no longer work, as my movements and attacks or seizures can happen any time and erratically. I live in daily pain, many days I cry out even in the street. I cannot hide my pain anymore. It is hard never knowing what the day has in store for me, I just have to keep going. It’s all anyone can do.

This is the short version of my story, I wouldn’t want to bore you with the rest. As the rest started years before, and is a long story to tell.

Some if my story has started to come out in my Psychology Sessions, good or bad?

Too many equations to go into, too hard to work out and give any easy answers.

It is believed my brain has broken from the past stresses and upsets I been unfortunate enough to have happen to me. There are no written reasons for this Disorder, no one course of treatment to follow.

Every person that is unfortunate enough to be diagnosed with Functional Movement Disorder, has their own personal reason behind the whys. Also the treatment has to be tailored to the individual, to fit with their individual problems.

Hopefully on this journey of finding out, and trying to learn to adjust and live with this Disorder, I may be able to give insight or offer some small help to others with the same or similar problems. Hopefully others may even help me, I live in hope for us all.

Please enjoy my site.

Glass Raised In The Air – But Why?

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It is very possible that you may have seen the above quote before, and I’m sure you all have your own thoughts and take on the story behind the words.

Here are mine 😉

Putting the glass down is easier said than done in some cases, as the person may have no idea what the glass contains, or why they picked it up in the first place.

Psychology can be an unmeasurable science. It can be a wonder, it can be interesting, it can be mind expanding, knowledgeable and clever.
Yes, psychology is very clever.

It can also be a lot of mumbo jumbo, but it’s up to the individual to sort out what’s in their head in the end.

No matter how many questions a psychologist can ask a person, if they don’t ask the one that finds the correct answer, then the glass is left raised in the air.

Makes you think doesn’t it?

These are my thoughts anyway, at this moment in time 😉

More About Me & Living With Functional Movement Disorder

I have functional movement disorder, a neurological movement disorder where my central nervous system has at some time in the past broken. I have a disconnection, so my brain no longer sends or receives the signals properly anymore for my body movements.

I have lots of overlapping symptoms from other movement disorders, such as MS, Parkinson’s, ME, Fibromyalgia, Chorea, Dystonia, CRPS, Migraines, Athritis, and others too.

I wake every day in pain, and with my hands curled, my arms and elbow joints in agony. My legs in pain, and now my feet (mostly my left foot) in cramp. So I have tablets in a tub ready on, my bedside table to take immediately I awake.
I then rub muscle gel into all my body areas that hurt and my joints.

Along with all this I also have non epileptic attacks and seizures. I also have the drop attacks.
In fact, my body seems so greedy as if it wants to have a bit of every ailment going!

20121229-113344.jpg
It is very hard going, and this is my life every day for the rest of my life.

My Neurology Consultant says I will have it for life, but that it may wax and wane. So I may have good days and bad days, but will never be fully physically fit again.

My Neuro a psychologist is of the same train of thought, although he is trying to help me get my head attacks and pains a little better (but with no promises!). Unfortunately he says I will have to learn to live with the rest of my movement problems.

Favourite saying – learn to live,with your abilities, rather than your disabilities!
A good saying I think :)

I try my hardest to stay chipper, to be the funny happy person I used to be before I got all this.
You see this time last year, I was still fine. I could still walk, I could still dance. I still had a life.
Now I live day to day, and on some of those days, I have to live hour to hour. It all depends on my attacks, and how my body decides to mess with my mind!

You see there is nothing wrong with my mind, I can think just fine. It is my brain that is broken, the machine, the cogs, that make my body work.

20121229-113123.jpg
I hate that I now feel trapped in a body, that I no longer have real control over.

Thanks for reading :)

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.

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 »

20140425-003725.jpg

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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Exciting Week Ahead!

This week I have a lot going on, so I have to somehow find the energy and strength to both get up early, and stay going! Unfortunately yesterday I had problems with my blog “dystoniasuffer.com” (Dystonia & Functional Movement Disorder Sufferer). I found myself unable to get into my site as I could not for …

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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 …

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