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 🙂

Functional Movement Disorder needs so much more awareness!

This morning I woke with a fully numb left arm, painful calf muscles, pain in the top front of my forehead, and a very heavy head which comes from the middle left side of my head which sometimes feels like it is being pulled downwards toward and through my neck down my back!

It all makes me so very tired, my body is constantly fighting itself and the tiredness is the body trying to repair itself and regenerate.

Does anyone else have the problems with their head like me?
My Drs still don’t know what it is, but think it relates to my seizures?

Last week I had a sleep study where I was filmed and all wired up, with six wires on my head, three on my forehead, two each side of my face, one on my chin, then a wire down my leg.
Lastly I had a strap put around my chest, this was to get readings of my chest rate and breathing.

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My sleep study is primarily to check for Sleep Apnoea, but also to check electrical impulses in my head and spasms in my body.

There are other things too, but I’m waiting to hear from the Consultants as I don’t want to get my hopes up.

This disorder certainly is draining, and you never know from one day to the next what your body is going to throw at you. Functional movement disorder is a neurological disorder, has so many symptoms, and I have a lot of them.

Though I am still fighting to make sure I do not also have an organic part to my movements, that I don’t only have a psychological disorder. As I’ve had spasms for so many years, years before what is thought to have been the psychological reason to my illness.
I will still continue to research this very weird disorder, a disorder that is very similar to PTSD.

Functional Movement Disorder needs so much more awareness!

It’s Our Functional Movement Disorder Awareness Week! 

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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?

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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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 the life of me remember my passwords, though to be honest I have had it before where I have input my password and it has told me it is wrong only for me to input the same again and it work!
I thought I had backed up all my database etc, and then proceeded to delete to start over agsain. But I seem to be having problems getting it back up, and am now unsure if it will even be done.
Gutted doesn’t cover it, I started my blog on 16th February 2012. That’s a lot of pages, and hundreds of posts of information all lost if my web hosts are unable to help me and my partner bring it back. My poor partner has been trying his best to help my since last night, but fear I may have not backed up everything I needed to 🙁
So I hope you do not mind, if I do a few blog posts here. After all, it is living through the eyes of a sufferer.

Wednesday I am going to become a Nanna for the second time, whoop whoop! My eldest daughter is having her little girl by a cesearean section, her baby has been stuck across ways and breach for the last approximately four weeks.
We are all very excited, it should have all happened today but there was emergencies so she got moved along which is not the news you want to hear when you have been waiting so long!

Though luckily, I am not feeling too well today. I know we never feel well with our disorder, but as you my fellow sufferers or carers, or family members all know, we still can feel worse than our normal daily issues we have to deal with.
I am just so very tired today, I ache terribly and my head feels off kilter and my scalp feels sore. My joints hurt really bad, and my back (as normal now) is causing me a lot of pain. I have taken three lots of morphine so far today, and that is out of my allowed four doses. So maybe Wednesday I will be be having a better day. whatever happens, I will drag myself up and out and be there for her and my new Granddaughter 🙂

On Thursday I am eventually getting help for my back pains, I am going to hospital to the surgery department for 8 o’clock in the morning.
I will be having a local anaestetic injection, and the steriod epidural injection. To hopefully be given the pain relief, I have waited many months for.

I was told last Monday when I saw the head man my Neurosugeon Mr Thorne, not to get my hopes up. Which was not what I expected, and made me feel slightly dissapointed. I had expected this injection to help, but I am now informed that it is possible it may not work as I have so many problems going on! Though if I am lucky it may help, and give some relief from the pains but that I will very likely still need to use the morphine alongside.
If however I am very lucky, the injection may work and give me the pain relief in my back and hopefully keep the relief going for a few months.
At the moment it is all ifs, buts and maybes. I just have to keep hope, and believe it WILL work.

By this timme next week, I might be back to using my walker instead of having to depend on mobility scooters all the time. Start to get out and become a bit more mobile again! Please 🙂

Thanks as always for reading folks, catch you later x

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 😉

Connectivity Is Power

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(The above is a picture of Neurons connecting to other Neurons)

    I have set up some forums for anyone that is interested in wanting to post questions, or chat. Also one for if anyone has information, or diagrams they feel they would like to share, that may be of use to others with our little known about disorder.

    The quote below is one I posted on my blog a long time ago, but seems very fitting now 🙂

    Connectivity is power,
    Power is electric,
    Electricity is vital,
    Vitally is exciting,
    Excitement makes people talk and connect,
    Connectivity is power,
    Power is electric…..

    Copyright © 2013 Dystonia And Functional Movement Disorder Sufferer Quote – Trying to raise awareness of Movement Disorders

Personal Independence Payment (PIP)

Information for all disabled people who claim benefits, and the new upcoming change to our DLA and Mobility benefits system payments with effect from 8th April 2013.

When will it effect you?

Claiming PIP
https://www.gov.uk/pip-checker
This is the link to check on when you may be effected by the new Personal Independence Payment (PIP) and when you can expect to have to reclaim for this instead of the old Disability Living Allowance (DLA) which is all changing this April 2013.

Here is the information given on the Government Website of what the rates are to be –
https://www.gov.uk/pip/what-youll-get

What you’ll get
Personal Independence Payment (PIP) is paid every 4 weeks. It’s tax free and can be paid if you’re in or out of work.

It is made up of 2 components (parts). Whether you get 1 or both of these depends on how your condition affects you.

Daily living component
Daily living component Weekly rate
Standard £53.00
Enhanced £79.15

Mobility component
Mobility component Weekly rate
Standard £21.00
Enhanced £55.25

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 😊

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.
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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 …

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 …

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