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.