Tuesday, 24 May 2011

The story of 5 little scleroses

In the week leading up to Christmas in 2010 my vision went haywire. My partner and I had just moved into a new house together for the first time and we had only been there for a week! Doctors thought it was a virus as I had extreme vertigo so my symptoms were shrugged off. After about five days of worsening vision and major fatigue my partner and I decided I needed to go to hospital. After 24 hours, several specialist consultations, two MRIs and four attempts at a lumbar puncture I was diagnosed with onset of MS. At this point I only had one sclerosis (in my brain stem) so technically it was an isolated demylination event. I was kept in hospital for three days and treated with some hardcore steroids and sent home on Christmas eve to recover. The steroids made me quite sick. I had a temporary and partial recovery for a few days before the return of double and blurred vision and fatigue. I insisted that it would get better, despite my worsening symptoms.

The following week I was at my parents place in the mountains attempting to celebrate a belated Christmas with my family, my partner and his four children. I knew it was getting serious on the night of our Christmas dinner. I was too fatigued to stand, or even maintain a conversation. That night in bed I noticed my right arm was tingling and going numb. At this point I hadn't realised just how bad MS attacks could get, but I was scared and in denial nonetheless. As luck would have it, the very next day my house in Brisbane flooded completely. While the heroic men in my life salvaged most of my posessions, I was preparing to return to hospital for another MRI.  I was starting to think I had some serious karmic issues from a previous life. Why the hell were these totally shitty things happening?! That night my symptoms took a pretty severe turn. I lost feeling in my right arm, and right side of my head and torso. My balance centre went - I couldn't move my head without vomiting, I couldn't walk, let alone sit, and my swallow reflex was failing. I couldn't cough or talk properly. To add insult to injury my hormones decided it was also time for my period! GREAT. The next MRI revealed two more scleroses. The doctors confirmed it was Multiple Sclerosis. I was pretty out of it for a few days and I felt like I could die - and I would have been ok with it. The doctors this time were a bit baffled. The steriods should have worked and yet I had new lesions in my brain. For the next week I was put on daily infusions of immunoglobulins - a human antibody treatment. It worked a treat...for a short while. By this time though, my vision had nearly fully recovered and I was independant enough to send home. That in itself was a triumph. But then I remembered I was homeless!

My partner and I stayed with his lovely elderly mother while we regrouped and assessed our situation. We took a couple of days to enjoy time with the kids and friends and to distract us from all that we had been through. Then it worsened again. I was really panicked to realise that the tingling had spread to all of my limbs. So, it was back to hospital. By the time I was admitted to a bed I was, again, in a bad way. I couldn't walk unassisted. My legs and arms had lost feeling and my face and mouth were numb. I thought it was never going to end. The doctors were starting to suspect lymphoma was the culprit since it looked like MS on scans, but it was not behaving like typical MS. They convinced me they needed another lumbar puncture to rule lymphoma out. Now THAT was the last straw for me! I remember saying something to the effect of, "fuck off!" incredulously at the doctor, quickly followed by an apology for my lapse in manners, then seriously: "no fucking way!" Every time I needed a needle now, for whatever reason, I freaked out - and needles never used to bother me. I had scars all over my hands and arms from dozens of canulas (and my veins had all collapsed) and I just did not want any more freaking needles. They insisted it was necessary so I sucked it up for another spinal tap - although I insisted on strong sedation first. It's funny that, even at times like this, you can find something to laugh about - namely, my drugged out remarks to the nurses and my family throughout the procedure. My poor family and partner were just exhausted and beside themselves. It certainly wasn't just me going through this. Yet another MRI found two more nasty scleroses. It was not lymphoma - but a very aggressive onset of MS. We were devastated.

Pincushion: words of encouragement from my love
The doctors had exhausted the early phases of treatment and decided to bypass the 'intermediate' or management treatments, like interferons, and go for the big guns. They wanted to start a drug called Rituximab - a type of chemotherapy used in luekaemia. In a short period of time I swung from "absolutely not" to "give it to me now". It was a hard decision to make and stand by, though. The doctors had to appeal to the medical board to give me the extremely expensive treatment after they denied it on the first application ($10k per infusion and I needed two!). It finally came though. The infusions were administered over a fortnight. It went well - the only side effects were hardened and hot veins and it took a couple of months for that to disappear completely. Most importantly, it arrested the MS attack. I was, and still am, so grateful for that.

This all happened in the space of eight long weeks - it was the most intense and stressful period I have ever endured. I was not able to work for three months and got pretty bored lying around in bed all day, every day. It has now been four months since my last infusion. I've had time to process my experiences, find a new home and return to work full time. Life is returning to some form of normalcy but I know it's just the beginning of my new life.

1 comment:

  1. You are beautiful Kirsty. But it makes me so deeply, deeply sad to relive what you have been through. It is all behind you now so POWER on.