As you all know, I am determined to get HSCT for my Multiple Sclerosis. There is a lot going on in the background to try to get to that point, so I thought I’d update you on where I am up to …
My first choice would be to have treatment in the UK on the NHS, but it’s a huge challenge to even be considered for treatment here. I have started by writing to my neurologist to see whether he would be willing to refer me to the Haematology department and Manchester Royal Infirmary as a I know that a handful of MS patients have already been treated there.
I haven’t had a reply from him, but I have had notification that my November appointment has been rearranged and a double appointment allocated. It’s really difficult to know what to make of this – perhaps he is considering referring me and needs a double appointment to discuss it all? Or perhaps he is worried that I am considering going abroad and has arranged a double appointment to try to talk me out of it??!
Even if this referral was successful, the next stage is for a panel at the MRI to consider my case. The criteria for treatment are shrouded in secrecy, so I have no idea if I have any chance at all!
If this route doesn’t get me there, my next option is to try to get referred to the London panel. To do this, I would need to convince my GP to refer me to a London neurologist for a second opinion on my MS.
From the beginning I have been told that my MS has “unusual presentation”, so I would try to be referred to a neurologist I am aware of, who has a particular interest in patients with unusual presentation …he also has an interest in HSCT.
Both of these routes have a very small chance of success in terms of me accessing treatment. UK neurologists are on the whole, not particularly supportive of HSCT at the moment. I really think this will change in the future but we haven’t got there yet.
Which then brings me to the other option …clinics abroad. There are a number of countries where HSCT is available at high cost and in some cases, only for residents of that particular country. There are also several unscrupulous facilities offering “stem cell therapy” which does not include all the stages of HSCT, so is therefore ineffective.
There are two clinics recommended by UK support groups – one in Mexico and one in Russia. I have spent a lot of time researching the treatment at both, talking to previous patients and having discussions with my family and have come to the conclusion that the clinic in Russia is right for me.
If you haven’t done the research I have, it perhaps sounds a little crazy to be planning to go to Russia for such life changing treatment …but it really isn’t! They have many years of experience of treating MS patients, a high success rate and an excellent safety record.
For a while I planned to exhaust all UK options before starting plans for going abroad, but each option presents a long journey and I’m worried about deteriorating while I wait for all these processes to run their course.
So, here I am pursuing both options at the same time.