Dx to Moscow and in between.
So now its March 2011 and Im online searching for something that probably isn't there. In fact, I don't even know what Im looking for! Answers maybe? A cure? Who knows? I do know I felt pretty desperate at that time and soon learnt how low human beings can sink in order to gain a few quid.
I came across "cures" from snake venom to diets, bee stings to vitamin supplements and soon learnt that as far as Im concerned only a vit D supp had any credence in regard to my ms.
I tried hyperbaric oxygen therapy for a year and never felt any difference and soon learnt that what works for some doesn't for others. Nothing seemed to work for me.
Then I came across CCSVI. I read that the sooner to diagnosis this procedure was performed the better the chance of success. I paid my £8000 and went to Bruges in Belgium and became another statistic of yet another scam. Again, some people say they benefited from it, I say look in the sky and wave to the flying pigs!! For me-rip off, rubbish. I had been legally mugged but it was my own fault. Desperation I suppose, and a tough lesson to learn.
I then enquired online about a clinic in the Dominican Republic that was offering some sort of procedure involving stem cells. I completed an online enquiry form and gave my home telephone number. Big mistake!! A bit more research taught me that an undercover reporter for the BBC had investigated the clinic and, you guessed it, another scam. We must've had 50 phone calls from a very pushy American lady detailling how her mother,brother, uncle, sister had all been cured of ms by this miraculous treatment. It was only after my sweet, demure wife got abusive one day that the calls finally stopped!!
Fast forward to December 2013. By this time I had refused 2 offers of chemo by my neuro in London. A once monthly infusion of cyclophosphamide for 2 years. I was told a 20% chance of stopping progression was a good chance. 1 in 5 did not sound good to me. The third and final time they offered it to me I was told that this was all there was, and if I didn't agree to it there was nothing else they could do. I felt that I was politely being told to take it or go away, not to waste their time. So I accepted, I still wasn't happy but chemo was due to start on the 14/01/14.
I took to the internet again and I honestly couldn't tell you how but I came across a Facebook page, Hematopioetic Stem Cell Transplant - MS & Autoimmune Diseases. The site was extraordinary, just what I was looking for. So many kind and friendly people who had been through hsct and were willing to share their experiences and help. Scientifically proven to help 80% of people and stop the underlying disease, this is where I wanted to be.
I went for my appointment in London and told my neuro of my intentions. Surprisingly he was supportive and explained that whilst he couldn't advise me to go as trials were still in their infancy in the UK, he truly believed that stem cell transplant in many diseases was the way forward.
I applied to Moscow in February and was accepted, admission date 16 June 2014.