Hi, my name is Cassie and I have MS. I was told that this was a progressive disease with no cure back in 2014 when I received my official diagnosis (my first symptom – going blind in my right eye was back in 2006).
I have been on disease modifying drugs (commonly referred to as ‘DMD’s’) for a few years now, the first was one I had to self-inject each morning; sadly this caused me to have cold sores every two weeks which was very hard to cope with, so I changed to a newer one which is in tablet form – one tablet twice a day every day. The first drug was not very efficient – about 35% from memory – the second was actually the best performing at 54% – that percentage relates to the chance it would slow progression of your MS, but hey, 54% IS better than zero which is what not taking any medication would mean. It also costs the NHS around £12,000 per year for just me!
I also changed my whole life around and removed as much stress as possible as stress can bring on relapses and they are not a good thing with MS as they are the things that cause the damage, some of which is permanent – and you never know what symptoms these relapses will bring and how severely affected you will be, nor how long they will last or if indeed you will have some permanent issues as a result.
I also started taking better care of my diet – I now cook pretty much all of my own food and make sure I eat good food with a wide range of nutrients etc as this would help my body fight the disease and stay healthier and stronger. There is no real way to monitor progression other than with an MRI scan – these cost money and the NHS only do them when there is good reason to (a change in your symptoms, a new medication etc). When I look back, I can see that I have deteriorated – I can do less than I used to, I am not as strong, my memory is worse as is my ‘brain fog’ where I just can’t think straight or rationally at times.
There was a program on Panorama in January 2016 called ‘Can You Stop My Multiple Sclerosis?’ I watched with interest – finally something on the horizon (albeit far horizon according to the program!) that was showing promise at halting progression of MS! It was basically using a combination of chemotherapy and stem cell therapy (bone marrow transplant) that is used to treat patients with leukaemia – some of those patients had MS and saw their disease virtually halt, and some of their symptoms improve so they decided to run a trial to see if this was actually something work following up on. It was exciting to learn about, but I didn’t get too excited as I am considered to be a ‘mild’ case so this kind of treatment was unlikely to be open to me until I got much worse in the future.
Fast forward about 11 months and I suddenly (I genuinely have no idea how this actually happened!) and I became aware of a group on Facebook talking about this treatment but having it done abroad. I was very sceptical at first until I read further into it, and realised that quite a lot of people from the UK were travelling to Russia and Mexico to have it done, plus some other countries that did not seem to be getting the same amazing results as these two places. The procedure is called Autologous Haematopoietic Stem Cell Transplantation.
I basically then researched for months and months, and applied in the mean-time to these two facilities (they both have waiting lists) and was lucky to be accepted for both.
I chose Russia (Moscow) as they have been doing it for longer and the treatment is done within a hospital (whereas Mexico is outpatient and you need your own carer plus far more prophylactic follow up drugs as the protocol is slightly different) Moscow is also slightly closer for the trip home when you are starting to feel weak as your recovery starts!
You can get a cheaper treatment but it only does the stem cell part – which works but only temporarily – ‘No Chemo, No Cure’ as that is what wipes out your rogue immune system and reboots it – the stem cells just speed up your recovery as they become your new white blood cells rather than waiting for your body to make them – it reduces recovery time (where you are at risk as you have ZERO immunity to most things) by about 5 days – doesn’t sound a lot but when something very minor could make you seriously sick or even kill you, 5 days is huge! My treatment also used my own stem cells (Autologous) which reduces the chance of infection and other problems.
I checked again with my NHS MS team in the UK before I left, and although they are starting to treat patients in the UK you need to be much sicker than I am to be considered for it, plus you have to have failed 2 of the more serious DMD’s – they will be using it at the other end of the disease progression path whereas Moscow are keen to treat all kinds of patient believing that stopping MS is best done as soon as possible, and you will also cope better with the procedure the younger and fitter that you are.
I was lucky enough to be able to get long term funding for the £45,000 treatment cost and fundraised to cover the flights and visas plus travel costs to the visa centre in London, etc and other sundry costs which are ongoing.
Although I have persuaded my NHS doctor to do my blood tests for me (he refused post treatment care initially until I presented my case with all of my research), I may need to still pay for the recommended follow up MRI’s to check progression has been halted in a year or so (at least £1,000 probably more), plus silly things like antibacterial gel, washing liquid, hand wash, spray, etc, etc.
We estimate the total for all this to be approaching £55,000.
I have been blown away by people’s generosity, and how many people I have been able to educate about the fact that this treatment even exists – many people are totally unaware of it, and a huge part of my goal with the fundraising was to try to tell the world about it – finding out there is hope after all to stop your progressive disease is an indescribable feeling – a bit like actual, real magic, like suddenly you know you are going to be OK.
Amazing. The relief was overwhelming.