@RitchieR

Subjects like this will always provoke different opinions, with each individuals thoughts mainly revolving around their own personal circumstances, desperation levels and assessment of risk and reward. Add into that beliefs by some that it's all a conspiracy by pharmaceuticals in countries of economic power to prevent this treatment and it does become a fairly emotive subject.
Only asking if God exists and anything to do with smoking would provoke similar reactions.
I genuinely wish you and others going for this treatment the very best, I'll be following as many stories about it as I can, hoping that it's a complete success, it's in all our best interests that it is. Only a small % of sufferers would ever be able to afford this treatment self funding, with no guarantees of success, that is what needs to be made crystal clear. Hope can bring unrealistic expectations as well as feelings of positivity.

I noticed after posting that you are a family doctor, I really hope you're not suggesting this course of action to any of your patients.

I would say be very careful and don't jump in without knowing all the facts. Stem cell therapy has been about for years, all sorts of wild claims are made by companies all over the world in an attempt to part you from your cash, and were talking considerable sums of money.
To start with, do you not think if a recognised treatment existed it would be available in the US and not Panama ? or Prague or Switzerland, where other similar companies exist.
There have been encouraging stories of late regarding stem cell therapy but it's still far from proven, the treatment is far from pleasant (chemotherapy to kill your immune system 1st before introducing previously harvested stem cells), risk of infection (which ain't good if you have no immune system to fight it)
Do you think the best medical personnel, leaders in the field of MS research decide "I'm gonna go work in Panama" ? NO THEY DON'T
We're all desperate for a solution, that's only natural, but I'm afraid this isn't the answer. The 2 participants may say it's useful but what do you really know about them that is provable fact ? It's not inconceivable they went to tell people it was "useful" to hide their embarrassment at spending so much money, or for a variety of reasons. Personally I'd be looking for a better response than "useful"
As it happens, my brother is a stem cell scientist in Florida, not in the field of MS, he grows body parts (like ears) on mice.
If there's any real developments with real possibilities he'll be in the know before you or I and I'm sure he will let me know, I'll happily shout about it on here should that ever happen.
Advances are undoubtedly being made but it's still too early to risk playing with your health further (In my humble opinion)

/pt2

Again, with RRMS, being in remission for lengthy periods has evidence of lesions shrinking in size over time, sometimes lessening issues, seemingly similar to HSCT MRI evidence, it's what attracted me to Gilenya as a DMD, as there was evidence of that happening to others taking it.

As I said in a previous post, everyone has different levels to risk and reward, and as much as everyone wants to believe, I have to point out in a Devil's advocate kind of way that it undoubtedly carries risk and anyone considering treatment really needs to be aware of that.

That's not to say that I wouldn't ever consider doing it, I think I would be a good candidate given what I've read. I could actually afford it so that's not what's stopping me.

I need more convincing at this stage, my own MS at the moment is bearable (I'm 90% of what I was pre Dx), but another major attack and yes I'm probably on a plane to a far off land. As I also said, personal situation influences that decision as well.

Your own situation certainly sounds encouraging but the real proof will really be evident in 20 years for me, my neuro basically said to me there would be a high probability I'd be in a chair by then, if I had HSCT I would still have to wait and see.

I've stayed away from having further MRI's for the last 18 months, it's a state of mind thing, I'm in remission, getting a bit stronger each day, nothing new to report and adopting a no news is good news approach, or burying my head in the sand as others might say.
I wish you all the best going forward, you are a pioneer for us all and definitely keep us updated on your progress.

I'll end now as this is a novel and I bet everyone's exhausted.

@A MyMSTeam Member

Hi Brendan, thanks for that, it's a lot to digest in one sitting.

I'll be the first to admit I'm no expert on the subject, HSCT has been about longer than I knew about before this thread was started and was only aware of it at all in January, so I'm still very much in the process of educating myself.

For me personally, the sample size is still too small, up until 2010 there were only 400-500 treatments and based upon their % increase since then, you're still talking under 5000 people worldwide, the majority of whom will be considered recent patients and thus too early to form definitive opinions about.

The 80+% of those who showed no progression over a period of time is definitely encouraging but if one were to be able to truly what that means you would have to know how many would have shown no progression without the treatment, which of course is impossible to know.

I read elsewhere about mortality rates associated with the treatment, in the early days 2% died, which is now down to 1.37%. That's still 1 in 70, I don't know if I like those odds very much.
The definition of the word "cure" seems to be different to everyone, for me it's being totally free of any symptoms, which in my case would mean reversal of optic neuritis, drop foot and the balance mechanism in my head mainly.

Only halting progression would presumably still leave these symptoms, which don't get me wrong I'd take, but don't believe it to be the dictionary definition of "cure"

Have to split the post it's too long lol

/cont

Mentioned Users

A MyMSTea...