Hello again Sergio
You are a clever boy aren’t you? Your English is fabulous and to have studied the hard parts of English Literature (ie Chaucer & Milton) is beyond the capabilities of many of us Brits.
As for me, I’ve had MS for 24 years. To start with, like Mick/Mike/Michel there were no DMDs so was left to get on with it, knowing nothing about MS and just having mainly small, mild relapses and ongoing problems like on and off spasms (that I didn’t know were spasms!)
Because my body is a bit of a baby, it can’t handle a lot of drugs, so have been mostly modifying drug free. I’m now aged 54 and after having several nasty relapses, I use a wheelchair full time. I added to my disability 18 months ago by having a fall and breaking my femur badly. (Biggest bone in the body and the worst possible place to break it - fixed by a huge plate from hip to knee and pins through both!)
So now I’m classed as Relapsing Progressive - basically Advanced MS, I won’t get any better and probably will get worse. But I very fortunately have a pretty fabulous husband who looks after me!!
Now, as to you and HSCT, I was thinking about this. You seem very set on it. And why not, you’re young and fit, you have a pretty good life and you want to keep things that way. So I do understand wanting to put the brakes on MS and say ‘stop, I wanna get off this train’! HSCT does look good in terms of ultimate benefits. For most people that is. Unfortunately it also comes complete with some very scary risks to balance out the potential benefits.
And then there’s that big problem, it’s not available in Spain. It’s not even fully available in the U.K., or in most of Europe (maybe all of Europe - how would I know, we’re stupid enough to have left the Union !) Plus that other big problem, the places it is available are scary in their own right - Mexico and Russia. And then there’s the cost.
So in your position there are several things I’d do. The first is to do all the research possible. I’d start here: https://mstrust.org. uk/a-z/stem-cells-and-ms-ahsct Obviously the MS Trust is a UK organisation, but their fact sheets are great. Pay particular attention to the risks (including death!). There’s also things like future infertility - I don’t know if you’d thought of having children in the future, you and your boyfriend may be nowhere near to thoughts like that (I have no idea of the logistics in Spain). There is also the fact that being on an extreme immunosuppressive therapy might be too risky, especially in a world with Covid in it. Don’t forget that Mexico (which is surely more attractive to you than Russia) has incredibly high Covid stats.
I’d also be doing pretty much what I’m sure you’ve been doing already and Googling like crazy. In this case, I wouldn’t say don’t Google the subject (unusually), just try to get accurate information. In the U.K., there’s the Barts Blog: Mechanisms of Progressive MS…Tau-Have we found a chicken an egg or a Tombstone? – The MS-Blog Then there’s this site. Be careful of the clinics offering HSCT abroad. Don’t forget they are in business to sell you expensive treatment.
You could also look on other MS Forums, such as All the latest on Shift.ms On that site, do a search on HSCT, there are lots of first person thoughts and experiences. Equally, there are many other experiences on the internet generally, on YouTube for example. Just remember nothing you read on the internet is necessarily true.
What I’d then do with all the information you collect is to weigh up the pros and cons. Try to keep an open mind about the procedure. Then start talking about it, to your friends, siblings (if you have any), your boyfriend/partner and ask your doctor what s/he thinks of it. Don’t just ask for a referral, ask for opinions on the benefits for someone in your situation.
If in the end you are still completely convinced that you want to do it, think about how. That’s the point where you try to find out if there is anyway you can get it funded by the state. Failing that, talk to your parents about it (I suggest you’d probably want to do that even if you had it paid for by the government!).
If you are asking them to fund it, try to put together a business case for them. By this I mean lay out all the facts, the possible benefits and the risks. Put it to them that you’d be asking for an investment in your future., in much the same way as they’ve probably already had to invest in your education.
In the end, if you change your mind about it bearing in mind all the facts, or if you cannot get it funded, think about what else you can do to protect your health. Consider all the DMD options. I assume in the short term at least you’d start taking a good disease modifying drug anyway. Think about Lemtrada (if that’s available to you), or Ocrevus, or Tysabri. These are all excellent drugs and you could find that Lemtrada, for example, puts the brakes on MS as well (maybe better) as HSCT.
I hope all of this gets you thinking and working out the very best way to beat MS.
Sue