The Story So Far - Part Three: Puzzle Pieces

Puzzle Pieces

Bear had the day off when I went to the Doctors to get my brain scan results, so he came with me.  She informed me that there was good news and there was bad news.  The good news was that the brain scan results had been faxed over.  The bad news was that they were abnormal.  The scan report says:

"There is modest focus of abnormal signal in the right corona radiata which extends towards the ventricular margin.  There are two equivocal adjacent foci of signal change.  There is no restricted diffusion.

There are no definite callosal, temporal stem or areas of infratentorial signal change.

Whilst the appearances are nonspecific they do raise the possibility of demyelination"

The Doctor told me that this meant there was no brain tumour, which caused Bear and I a sigh of relief.  But she did think that this almost certainly indicated towards Multiple Sclerosis.  She wanted to write to the Neurologist and request that he see me quicker considering the impact on my life that this was having, especially on my work situation.  I wouldn't be able to bear it if I lost my job.  She also suggested that I have a lumbar puncture.  I asked how long this would all take to get a diagnosis and to start on treatment, but the only thing she could suggest (aside from writing to hurry things along) was to call the Neurologist's secretary and ask how much it would cost to go private.  I think it's sickening that if I don't want to wait two months to find out what is going on with my BRAIN that i have to pay for the privilege.  The amount that i pay in tax and NI every single month could cover my rent but still, if I don't want to spend two months in agony, debilitation or a state of worry - I have to pay.

At this point, I hadn't really thought about MS in too much detail.  I didn't really know what was involved and I certainly didn't know the myriad of symptoms that one could experience, as I do now!  Bear and I went away dazed, upset and confused.  I had the rest of the week off sick and used the time to research MS whenever I felt well enough.  I read about the symptoms, about the early symptoms that many people experience tens of years before it gets to a point where they are diagnosed.  I read stories and blogs of those who had experienced symptoms many times before their diagnosis but never correlated them to any significant lack of well-being until they were diagnosed with MS.

So it got me thinking about all of the ailments that I had been experiencing over the last ten years.

• I had suffered from an eating disorder from late 2004 until 2009 and have been in recovery ever since.  I don't know how much stress this put on my immune system but I only started my journey to recovery because my Doctor threatened to put me in a feeding clinic if I didn't start to put on weight (I'm 5ft 10ins and now weight 13 stone - back then I weight 9 stone, so you can imagine why he said that!).

• I had treatment for, what I believe was an incorrect diagnosis, depression in 2010.  I worked in Recruitment for a leading agency, which in all fairness was a stressful job but I was doing well.  My symptoms were physical more than mental - my legs felt heavy, my balance was poor, my heartbeat was very pronounced and the beating of it kept me awake at night, my speech was slurred and I couldn't concentrate properly.  Sound familiar anyone?!  My 'depression' was diagnosed not by a GP, nurse or Consultant, but by an Occupational Health Assessor employed by the company.  Given that I worked in an industry were 1 in 5 employees suffered from depression, you can hardly blame the girl for coming to that conclusion!  I was also in an unhappy relationship so natually I accepted the diagnosis, the subsequent anti-depressants from the GP and the time off work to recuperate.  I took exactly 4 weeks off work, but unfortunately didn't rest or rehabilitate.  I was unhappy, so I drank.  A lot.  I thought that I was inadequate and an idiot.  I beat myself up for not being happy.  I hated that my unhappiness was stopping my body from working, and I felt like a failure.  Eventually after a few weeks back at work, I had a breakdown and my mum came to collect me and took me home with her.  I believe that if I had had more tests at this point, instead of a flippant diagnosis of depression (lest not forget that a symptom of MS is mood swings/depression!) I would have not got to this point mentally.

•  Just after moving in with Bear I started getting very bad lower left hand side pelvic pain, which after an ultrasound scan showed up a very small amount of endometrosis.  But looking back I can remember a number of MS symptoms as well, the heavy legs, the fatigue and confusion, the struggling with breathing.  I had surgery which included a week off work to recuperate, after which I was feeling as good as new!

•  About a year after moving in with Bear (mid 2012) and getting a fantastic job in Birmingham, I started to feel like I couldn't breathe properly - like someone was hugging me really really tightly and I couldn't take a deep breath.  The only time I could breathe deeply was if I yawned!!  It affected me so much that half way through a Body Pump class at the gym I had to run out and struggled to breathe.  This had never happened before and I was regularly running long distance, so I wasn't unfit!  I had ran a half marathon 4 months prior for crying out loud!  OK yes, I smoked, but no more than 7 a day.  My GP took lung pressure readings and they were a bit low so she gave me an inhaler and diagnosed asthma for the time being.  She also sent me for a chest x-ray, which happened to be the same day, and the results of which were all clear.  I used the inhaler about twice over the following few months and the feeling just faded away in time.  I put it down to getting old!

•  Around the same time I had started experiencing pain in my left shoulder/neck area which made it feel really tight, like i had lifted a really heavy weight incorrectly.  I was very active at this point, going to the gym every day, but I hardly lifted weights I mostly did cardio, so this didn't figure.  I did think that it could be related to years of sleeping on my front with my forearms and hands tucked up under my pillow.  I ignored it putting it down to old age until on Christmas morning of 2011, of all days, it spasmed in the shower.  I spent the ENTIRE Christmas week walking like Quasimodo and in agony.  I went to see a Physio who diagnosed a lack of fluid between my spinal discs.  I have NEVER been so embarrassed though - I had booked the appointment that day (it was coincidence that he had an appointment free as later I heard that he was one of the best in the country!) - as I had turned up in my work clothes underneath which I had not only laddered tights but the most frumpy ugly underwear you could ever imagine!  And he made me strip down to my underwear.  Oh yea, and my feet whiffed when I took my shoes off - MORTIFYING!  In all seriousness, the neck stiffness and occasional spasms have continued to bug me on and off since.  I've not been brave enough to go back to a physio but I have found that a strong anti-inflammatory works wonders :) 

• For as long as I can remember I have had shooting pains going up and down my legs, but more so over the last three years.  It feel like someone has poked me with a cattle prod and it is isolated to when I'm sitting or lying down.  It rarely happens when I'm standing up.  I asked Bear a couple of days ago, "Are you sure you have NEVER had these feelings?", I was SURE that everyone experienced them, that it was normal.  He categorically said 'NO'!

• I have a number of times, I would say six outside of the 'depressive' episode noted above, experienced sudden and debilitating periods of extreme fatigue.  Where one minute I have been chatting away and enthusiastic and then the next I am like a rag-doll and unable to move.  Bear has witnessed these more than anyone else that I have been in a relationship with (the last 3.5 years) and he has admitted that on occasions he has got scared.  When it happens I can barely respond, and they can last from anything between a couple of minutes to a couple of hours.  My breathing goes shallow, my heartbeat become very faint, I can't open my eyes, speak or move my head and I just want to sleep.

All of the above are like puzzle pieces to me, pieces which fit in to the larger picture of MS.  Along with the immeasurable amount of colds, flu, chest infections, urine infections and the general lethargy they all amounted in the feeling that I wasn't quite cut out for life.  The slightest social event would leave me exhausted and a hangover would last two days at least!  I felt like an old woman before my time, not a 29 year old with an active social and work life.  Bear would comment, "I've never known anyone to physically struggle with life as much as you do".  I would grudgingly agree with him, hating myself for not being able to juggle life as perfectly as I could in my ideals.

The Story So Far - Part Two: No Man's Land

No Man's Land

After being discharged from Hospital on the Sunday I came back home with Bear for complete relaxation and recuperation.  The Consultant advised that I should take sick leave from work for at least the beginning of the week, which, for a change, I listened to!  Bear was great; fetching me cups of tea and making dinner, even though he had to go to work himself!  During this period the only symptoms I was having were problems with vision (everything was easily blurred and I had to really concentrate to focus, however putting my glasses on helped quite a bit), my balance was poor and my walking was very slow and deliberate.  I had to really concentrate on putting one foot in front of the other and I felt like my legs didn't belong to me - like I couldn't tell how much weight or pressure I was putting on them so I had to be careful.  The tingling that I had experienced earlier when in the hospital had started to ebb away and my concentration and mood were significantly improved.

By Thursday I was gagging to go back to work and have some semblance of normality in my life.  At work my colleagues were understanding and concerned, and I was open and honest about what was happening.  Although to be fair, I didn't really know what was happening myself - just that something wasn't right and there would be further investigations.  I have a great rapport with my senior colleagues and peers at work, I do my job well, and although I think some of them were guilty of thinking bad of me for taking such a large amount of time off, I think they understood when they saw me at work that Thursday and Friday that this wasn't a minor illness or over-exaggeration.  My boss, unbeknown to him that I had even been in hospital over the weekend, exclaimed loudly whilst I walked to the printer, "Is this the World's slowest walking competition?"  I saw the funny side, how could I not?  But I just couldn't walk any faster.  I shook when I got the milk out of the fridge to make a cup of coffee, I was holding on to desks as I walked by for balance, I had to squint at the computer screen (even with my glasses on) to see what I was typing, I couldn't hold my pen properly to write, my speech was slurred to the point where someone asked in a meeting if I had been drinking at lunchtime.  I found typing whilst listening to someone explain how a specific portion of code flowed through the system impossible.  This was the most worrying thing for me.  I'm constantly doing three things, never mind TWO, at once - I can't just watch TV, I have to be playing a card game on my iPod whilst also texting friends and flicking through a magazine.  I PRIDE myself on my ability to do two things at once - I did it at work ALL of the time.  So why did it sound like the person sitting next to me was speaking Vulcan whilst I was knocking out the simplest of requests by email?

I found that relaxing would temporarily take my symptoms away, and one minute I felt almost back to normal again and so would do something like clean the bathroom with a surge of energy, only to get half way through and collapse in a heap on the sofa unable to move.  Despite this my spirits were positive and I was sure that it was all still a big fuss about nothing still.  I wouldn't have been surprised if my GP or a consultant had suggested that I was just stressed and needed some time out - besides I hadn't had any proper time off from work since December 2012!

On the 17th September I had a brain scan, which I found out about purely by coincidence!  That day I had woken up feeling like someone had repeatedly been hitting me all over my body.  My skin felt bruised, my legs were so weak that even walking to the toilet was difficult, I had an awful headache and I couldn't see properly.  This was the first time that I experienced real vertigo.  Everything seemed unreal, like I was existing in a bubble and it just wouldn't stop moving!  All sounds were muffled and my brain wasn't registering what I was seeing straight away - there seemed to be a slight delay.  I had taken Valium before whilst admitted to hospital in 2011 for a severe panic attack and I felt similar.  Needless to say, I called work to explain and they were thankfully understanding.  Half an hour later I received a call from the Imaging Department at Charring Cross hospital to say that my appointment for a brain scan that day would have to be cancelled as the MRI hadn't switched on properly.  This was the first that I had heard about any brain scan!! I had received no letters, phone calls or emails!  The radiologist, although sympathetic and most probably not very surprised at the lack contact, said that if they had to re-arrange they would try and make it ASAP and before I went on holiday.  Deflated and angry at the obvious failings in NHS administration I expected not to receive a further appointment for months BUT the Radiologist called back and said that the MRI machine was now working and if I could still make it today that would be great! :)  I wasn't really in any state to go anywhere and the thought of getting on the tube from Ealing to Hammersmith made me want to cry, but I did it and I got there (with a very large Costa Coffee caramel latte in hand!).

Some people find MRIs scary.  I don't often get the opportunity to lie down and think of nothing (certainly not without feeling guilty about it!) so for me, being enclosed in a coffin like environment and having loud noises radiated through my ears didn't bother me in the slightest!  The concerned face of the Radiologist when she asked me if I had an appointment to see the Neurologist urgently did, though.  She knew something and when asked if she spotted anything told me that it would have to be confirmed by a Neurologist.  I was still hanging on so desperately to the hope that I would be shooed away and told to shake myself off and get on with it because it was just a little dose of stress.  But at that moment, I knew it wasn't.  I knew that the organ upon which I relied so heavily to make me ME had let me down in some way or another.  It hit me that I wasn't making it all up (irrationally I think we all worry that we are doing this, whether it's narcissism or self-preservation, I don't know) and then I started to get scared.  Surely she would have told me that 'everything looked OK and not to worry' if it had all been fine?  I decided that I needed to take action and be in control of something, so I went to the Outpatients Appointment department to check if I had any other tests or appointments booked in without my knowledge!  I did! Neurology Outpatients appointment on the 19th NOVEMBER!!!  But that was two months away!  Surely that wasn't right?  Didn't they know that there was something wrong with my brain?!?!  It takes a while to become rational in these situations and realise that:

a)  There might not actually be anything wrong - a worried Radiologist's face does not a tumour make;

b)  That there are probably thousands of people in the same boat - I'm no more special.

I struggled through the Friday at work and relished a weekend of relaxation and no plans.  The weekend came and went and although I managed to go to Ikea with Bear and pick up a few home furnishings I didn't get overly tired, mostly probably because I insisted that we sit down and drink coffee every hour or so!  On Monday, however, around 11am at work, the fatigue hit me like a punch in face, torso and legs all at the same time.  My brain swam and my eyes dilated.  I couldn't concentrate on what people were saying in meetings, I just stared in to space willing myself to concentrate and understand.  I felt humiliated and just glad that we didn't have clients with us that day.  I couldn't go on like this so I called my managers in to a meeting and explained how I felt and admitted that I was struggling.  they admitted that they could see that i was too.  We decided that it was time for me to take some time out and to use the time to try and find some answers from the Consultants.

That afternoon I called my GP who suggested that I see her the next morning where she could take some more bloods and she would try and chase up my brain scan results.  For the first time that all of this had been going on, I sobbed down the phone to her and I think she recognised my utter desperation and confusion.  I just wanted my life to go back to normal - why was this happening?!

At the time the waiting for results seemed worse than actually having the results - but I think this is only when you are still clutching to the naive insistent hope that you are going to be told that it's 'just stress'.