Officially Sick

expressive sculpture of a female 
 
Good news, Ladies and Gentlemen.

might war is OFFICIALLY sick.

After 701 days of being unwell, I have been seen by the specialist doctor at the National Hospital for Neurology and Neurosurgery; and we now finally know what is wrong.

 

The diagnosis

I have been diagnosed as having functional neurological symptoms (movement disorder).

 

What is wrong?

twitches         buzzing sensations         electric shock sensations         tremors         intermittent blurring         double vision         weakness         paralysis         pain         walking problems         slurred speech         fatigue         spasms         sleep problems         poor memory/concentration         dizziness         swallowing problems         bladder problems         reduced vision         involuntary noises
 
 
The symptoms that I have – which result in abnormal movement or positioning of part of the body – indicate that my nervous system is not working properly. The very good news is that this is not due to an underlying neurological disease.

In plain English: there is a problem with the way my brain is sending messages to, and receiving messages from, my body.

 

What can be done to sort it?

Intensive rehabilitation could help my situation to improve and be better managed.

Unfortunately, there is only ONE such programme in the whole country and the waiting list is “up to a year”. In the meantime, the doctor is arranging for the local physiotherapy team to do some specialist work with me.

 

What next?

told ya t-shirt Well, I have a better idea of what is wrong and what can be done. Ultimately, this is going to be a slow, mending/healing process.

It’s all good though, because now … I know that it wasn’t just me.

I can’t begin to tell you how good it feels to be told that all this pain and dysfunction are not just some figment of my imagination.
 
I’m still learning about the diagnosis and what it means, but I’ll keep you updated as I discover this new world of mine.
 

And to my GP and my Neurologist – who both thought I was making shit up: Bite Me!!!

 
 

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AUTHOR: I am might war. I have a love of music, the written word, travel, Anime, polar bears, people and “sticking and colouring”.

13 thoughts on “Officially Sick

  1. I am glad you finally got an answer. It is incredibly validating, not to mention being the key to finally getting needed relief! I experienced symptoms I didn’t understand for many years myself before finally getting answers (also a neuro disorder) and while intimidating to find out what I was dealing with, it was such a relief to find out I was not crazy!

    I hope the more you learn you are able to start gaining some relief, and that you are able to get into this program as soon as possible.

    1. Thank you SnapInTime, the relief of getting a tangible answer to all this has been great. I almost kissed the doctor when he began his explanation of my symptoms with the words “First of all, let me tell you that you’re not crazy”. It made a refreshing change to not have to prove my suffering to yet another medical professional.

  2. MightWar – at last, you’ve been pegged. Seriously, it is a comfort to have a name for something, particularly as bewildering as your journey has been. I am willing to bet they have not had a client for rehab that matches you in an indomitable spirit, perseverance, and plain old spit in your eye “I will succeed…I will live….I will triumph.” Best ~ HuntMode

    1. Thanks so much HuntMode. Now that my pain has a name, I feel like I have a starting point from which to work from in rebuilding my life. It’s a bit overwhelming, but exciting too.

  3. Mightwar, you are one helluva woman! I am so pleased that you now have a name for this goddamned train wreck that has taken over your life! 701 days – that is nearly two years, isn’t it?! Well, even if the wait list is one year, in your condition, that is a bloody long time, but on the bright side, at least there IS a clinic you can get treatment at and the waitlist is ONLY one year! Goodness, you know how long it takes to get a housing commision home here in Australia? (not that I want or need one of those, but you know) Four to ten years! In East Berlin, during communist times, one put one’s newborn baby’s name on a waiting list to get them a Trabant (crappy two-stroke car) when they turned eighteen. EIGHTEEN! So, at least your wait list is only a mere little twelve months. Plus, like you said, you will do stuff in the meantime to start the healing ball rolling. I know you will do it. I KNOW you will do it! And as for your GP and Neurologist? BITE ME, too! lol.

    p.s. have you been out dancing yet?

    1. Well strawbs, the diagnosis came just in time as it was getting harder to resist the temptation to headbutt the GP and Neurologist just so they would take me seriously. 😉

      I have no issues about the waiting list as the specialist doctor fully explained the process and he is making the referral himself, so it will happen.

      Not been out dancing yet as the last three weeks have been a bit of a struggle. Feels like I am heading for another bad patch, but I have a diagnosis! 🙂

      1. Oh what a shame you have not managed to go out dancing yet. I hope this bad patch wears itself out before it starts and you start to get treatment asap!!! It’s great that you finally got to see a doctor that will listen,and make a referral. And, did I mention, I am SO pleased you have a diagnosis. This means you can start treating the cause and not just the symptoms. And no, how on EARTH could you have been making it all up!?!?!?!?! It is beyond me how they could even think that.

  4. I admire your wit and strength in dealing with the pain and confusion nature has caused you. I pray for a quick treatment for your condition.

  5. Mightwar, you are so inspirational! As a wearer of a neurological illness myself (MS), I know how hard it can be to get a diagnosis. I was fairly lucky because I was diagnosed in the space of 4 months, but I know people who were shopping around for doctors for 10 years before being diagnosed. Ten years!

    I share your intrigue because neurological illnesses can be funny, weird, outright painful yet quite interesting. Since my own diagnosis I learned so much about the human brain, the inside of our human body (see the Body Exhibition if you can) and how a living being works on a chemical and physical level.

    Your life seems pretty full of happy thoughts, perfect writing and how to live with what you’ve been given, and I look forward to reading more of your blog!

    1. Hello Billie

      Thank you for your comments. I agree with you, neurological illnesses are indeed fascinating – particularly due to their intangible and yet vital nature. This whole experience has been a huge learning curve; made bearable by the people who fill my life with love, support and laughter.

      I have always been fascinated by the human body and this illness has allowed me access into another dimension of it. I have not always been welcoming of it – call me stubborn 😉 – but as far as I’m concerned, living is an experience: whether it be good, bad or indifferent.

      I was shocked by your bit about waiting 10 years for a diagnosis. I think that would have broken me, pure and simply. It is the weariness of neurological illness that breaks me down: that not knowing what state your body will be in from hour to hour.

      I’m wondering if you have a blog too. If so, I would be interested in reading some of your writing if you are willing. And I love the quote on your Gravatar 🙂

      1. My blog is on willeke73.wordpress.com so go ahead!

        Yes I know what you mean. Because there are so many symptoms related to MS (over 50!), it is hard to diagnose for some people. I was truly shocked also when that lady told me she was waiting for 10 years to get the proper diagnosis. That is just utterly horrifying if you can’t get the right label on what is wrong with you. Like I wrote, I was quite lucky because I was diagnosed in the space of 4 months but I had been proactive in getting that done. I checked myself into hospital because the pains I had were so different from what I had been dealing with before, plus I was severely tired… could not even walk from my bed to the kitchen so thank god it turned out OK in the sense that it only took 4 months.

        I suppose any neurological illness is hard to live with, but like you say, it’s a learning curve. Some things you will get to accept, others not straight away and others you will always find hard to live with. Not being able to do what you used to is painful, but you learn to do things that fit into your daily life. I’ve a blog post about this: http://willeke73.wordpress.com/2012/12/11/the-road-well-traveled/ and http://willeke73.wordpress.com/2012/12/05/2012-not-the-end-of-the-world/ and http://willeke73.wordpress.com/2012/06/21/newly-diagnosed-with-multiple-sclerosis/ and http://willeke73.wordpress.com/2011/11/16/life-begins-at-the-end-of-your-comfort-zone/#more-386 and http://willeke73.wordpress.com/2013/02/03/ms-a-social-disconnect/

        You write brilliantly so I definitely will return to your blog. And if you need advice or just want to vent, feel free to mail me :D)

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