MY MEDICAL JOURNEY SO FAR
The central nervous system in an MS patient
WHAT IS MULTIPLE SCLEROSIS???
Multiple Sclerosis (also referred to as MS) is a disease in the central nervous system – basically your immune system is attacking your own body (an autoimmune disease). Click HERE to read a good description of what it involves.
HOW IT ALL BEGAN
One morning in September 1999 I discovered my left foot was completely numb (not like pins & needles), by the next morning my right foot had gone numb too including spreading up my legs to my knees – to say I was concerned was an understatement!
Keeping it short within a few days the numbness had spread up my body & weakness increased in my arms to the point that I struggled to open the door handles. The thing that freaked me out the most was when I was at work (The Settlement Restaurant in Wellington) & I couldn’t even cut a tomato! After a trip to my family doctor who immediately suspected it was MS, a neurological examination at the hospital, being immediately admitted I was started on my first ever treatment of IV Steroids By this point I had deteriorated rapidly meaning that I couldn’t even gather the strength to butter my toast.
Things were really starting to hit me emotionally however I was relieved that on the 3rd day there they got me into have my very first MRI scan @ Wakefield Radiology. All I remember was praying that they would be able to find something from the scan so I didn’t have to under go a lumber puncture!To my relief very soon after having it I was called into a mtg with my parents to be told that I had Multiple Sclerosis – what relief I didn’t have to have a lumber puncture, thank you Lord!
*Doctors now say that according to my medical records the MS probably started in 1994 after I had Glandular Fever (Epstein-Barr virus). I had what we think was an episode of ‘Optic Neuritis’ which affected my vision. It is very common for MS to be triggered with people who have an episode of this virus especially for those with a predisposition to having MS (there are many factors contributing to this).
Being a determined 19 year old (on a HIGH from the steroids) all I wanted to do was go home & repack my bags & go to a conference that I was already booked in at Al Rancho & so I did!
I can’t imagine what my amazing parents went through knowing that there eldest ‘stubborn, determined, independent’ daughter had been diagnosed with Multiple Sclerosis – I wouldn’t which that on anyone!
THE FIRST YEAR AFTER DIAGNOSES
I didn’t really understand what all the fuss was about initially as life carried on … At the beginning of 1999 I went flatting (which apparently I had been ready to do since I was 5 years old). I had the privilege of getting a nannying job for my old english teacher. She had
3 boys aged 4,6 & 8 who I adored. At that time I didn’t have my drivers licence but that was ok I walked every where; approximately 4 hours a day up & down the Island Bay Hills wearing my beloved steel cap boots (which I still have & look forward to wearing again).
I was living a very busy life however the fatigue started to kick in! Luckily my job/boss was flexible so it was ok that I spent periods of time out to it on their coach.
The injection supplies
After living in Nelson for 3 years, enduring the climate change & experiencing quite a few relapse which would cause me to be bed ridden for weeks on end. In 2002 I had the privilege of being one of the first people in New Zealand receiving the treatment ‘Beta Interferon
‘. It was one you injected every 2nd day & the side effects were horrible (although it worked really well) thus why in 2007 I came off it. Research is now saying that ‘Avonex
‘ is a better treatment to be on long term.
USANA HEALTH SCIENCES
During that time I had the privilege of discovering Usana Health Sciences
. There products have been & are amazing!!! I still have MS but I have a really healthy body knowing that Im putting the products in that Olympic athletes use (only supplement endorsed by the IOC) – only the best! Click here
to see about the science behind these products.
In 2007 6 months after stopping the Beta Interferon I suffered a MAJOR relapse which put me in hospital for 6 weeks paralysed. During this time my neurologist put me on a medication they used in U.S.A. called Mitazantrone
. This was a form of chemotherapy with potential severe cardiac consequences. BUT it got me out of bed; I had to learn how to walk (after major damage esp. on my left side). I was grateful to be able to go home, although using one crutch.
SANOVIV MEDICAL INSTITUTE
In 2009 I had some AMAZING friends fundraise 30+ k to send me to Sanoviv Medical Institute
in Mexico. This was an incredible yet hard time as I under went MANY tests, was on a raw diet for the whole time (which I loved), spent MANY hours in the hyperbaric chamber, regular colonics and so much more!
I highly recommend it, although be prepared you have to use their 100% organic cotton clothes & yes ladies NO MAKE UP OR PERFUME! if you do have a health condition you will be spending close to the whole day having tests…
By the pools
This my AMAZING friend Rachelle Brass accompany me to Sanoviv – we had many laughs!!!
Escaping the chamber
It was sooo cool to also have my dear friends Chris & Shalom ‘pop’ in from Colorado & they even spent some time in the chamber with me!!!
BIORESONANCE THERAPY + more
On returning from Sanoviv I had some Bioresonance therapy with Helen Loveday
, had my amalgam fillings removed (I had a lot), changed my lifestyle & diet including the ‘MS recovery diet
‘ for 6 months & FELT AMAZING!!! However being gluten, diary, egg, legume & yeast free was certainly a challenge let along anti social!
HOLISTIC = I believe that all these avenues I have pursued are important as I maintain an ‘Holistic’ approach to my health – Medicines (YES I I believe they work) but we have brains so I also have & think its important to focus on diet, lifestyle, eliminating any other unhelpful thing and more.
NOTHING, NOTHING, NOTHING!!!
Over the next three years I was stable & not having to be on any treatment, although I was slowly deteriorating so by 2012 I had to start using 2 crutches 1) for my safety 2) so I didn’t look drunk;)
Also known as ‘chronic cerebrospinal venous insufficiency’
is the narrowing of veins in the neck and chest that carry away from the brain and spinal cord. The theory is that when blood flow is slowed, it backs up into the brain and spinal cord and leads to oxygen loss and iron deposits in the brain.
At the beginning of 2012 again thanks to some amazing friends who fundrasied for me I underwent this procedure at the Southern Cross Hospital in Wellington. Which involved an angioplasty of the affected veins.
I definitely experienced some instant relief from the MS symptoms
however unfortunately this was short lived.
In June 2012 I started on the medication TYSABRI
(also known as Natalizumab)
but BEWARE there is a potential nasty side effect = death due to getting PML if positive for the JC Virus.
However it did generally stabilise me although I only had the 23 out of 24 treatments I was allowed (I am JC+) with regular monitoring for PLL through brain scans etc. I am VERY grateful that I stopped after the 23rd treatment as test results later received showed that my risk was DANGEROUSLY HIGH – phew- definitely worth paying attention when I lost the peace that I had for the other 23 infusions – thank you Lord!
My poor foot
As many people will now my viens don’t like IV lines. My last accessible vein for IV lines is in my foot (OUCH!) – now only for emergencies!
Early on in those 23 months I had to have a permanent portacath
inserted for easy access when I had the monthly infusions at the hospital (now becoming my 3rd home).
Another side effect of being on this treatment was that you become much more susceptible to any bug, flu & virus that are around – you pretty much get it all:(