My Story

My name is Megan Rundback. I am 43 years old and I was diagnosed with multiple sclerosis in 1995. I am married with 3 beautiful girls 17yrs, 12yrs and 10yrs and we live on the South Coast, Illawarra region in Australia.

I remember the day of my diagnosis clearly . . . Firstly, what took me to the doctors. 

When I was 19 I went to the doctors, because I thought I had chronic fatigue because I was tired all the time. Then I had blurred vision, only enough to squint when I was reading the movie credits, but $500 later, I had a really nice pair of glasses (not that I needed them). Six months later I was fainting and the doctor said I had a middle ear infection. Then a little later, I had a numb side of my body and that’s when I was diagnosed with multiple sclerosis.

I remember the moment I was given this diagnosis and I replied, “Ok, so how do we fix that?”  I was familiar with the term MS due to the readathons I had done at school, but what it actually really meant to a person diagnosed, I had no idea!

Since this time I have been on three different medications to try and slow down the progression of the disease and overall, many people would still not be aware of my internal struggles that I have with my MS.

But recently things have changed . . .  I was sent to the emergency department by my Neurologist as she had some concerns that I was showing signs of a rare, but usually fatal brain infection called progressive multifocal leukoencephalopathy (PML).

I was advised to cease my MS medication as I had tested positive to something called John Cunningham virus (JCV). I will not go into the risks of JCV here, as I am sure if you investigate you will note that many people can be JCV positive and have no issues. It is a problem if you have a suppressed immune system like me, that you can have an increased chance of PML. My lesion count (MS progression) had doubled over the past year and my symptoms have become worse. Basically I have very limited treatment options due to being JCV positive.

This brings me to the point of why I am writing this message. Approximately 2 years ago I just happened to see a 60mins story about a ground breaking treatment for MS called Haematopoietic Stem Cell Transplantation (HSCT). I have provided the story link below. I would like to acknowledge and thank Kristy Cruise and the many HSCT warriors before me, who have assisted me with information about HSCT.

Kristy Cruise 60 min story

I applied for this treatment in March 2014 and due to the large interest and applicants, I was given a date of November 2016. I have since updated them on my current medical condition and they have moved my date to 28 June 2016 and requested I be medication free until treatment.

I have also investigated the clinical trials that are currently going on in Sydney at St Vincent's Hospital, but although I meet most of the strict criteria, I do not meet all and I am not eligible to have treatment in Australia. I have joined many blog and FaceBook pages and have been following the HSCT community since March 2014.

HSCT treatment is done in a number of countries and there are many Aussies heading to Russia, Singapore, Mexico, Germany and the USA. The cost varies depending on length of treatment and country, but all are expensive and out of many peoples reach.

Like many Aussies before me, I will need to fundraise as much as possible to pay for this treatment.

Do I want to do this . . . I have little choice if I want to try and stay as well as I can for my family and the future.

My aim is to halt the progression of my MS and to do that I need to go on this journey.

So if you have any ideas or can assist in any way, it would be really appreciated.

Hope. Love. Live. – HSCT - A mother’s mission to halt her MS - This is the name I have chosen for my upcoming journey, blog and Facebook page.

Thank You for taking the time to read my story.

Hope. Love. Live.
Megan x