I’m seriously considering HSCT treatment, probably privately,and hopefully in the UK. I MAY be primary progressive and don’t fit normal criteria . Searched Facebook etc but can’t find any information on any success, or otherwise, on primary progressive patients.
Can anyone point me in the right direction for information ?
Johnh
Well, John, it’s a case of “you pays yer money and you takes yer choice”.
Seriously, if you do a search on here, you will find that opinion is very polarised.
The quick answer seems to be that it may work, and there may be no side effects.
What you have to do is a sort of cost/benefit calculation.
What are you like now?
What could be like in 10 - 20 - 30 - years time, starting from how old you are now?
Can you look at HSCT as an investment in a better future life, and not just a treatment?
And (most important this one), what will you be like if it does not work/goes wrong?
But, the biggest question must be:
Why start considering something like HSCT now?
You don’t have a Dx.
You may be better off to invest £100 or so in the kit to give yourself almost a year’s supply of Biotin - which looks to be more effective, and surely far less harmful.
Geoff
Thanks for the reply. I’ve been taking Biotin and Thiamin for 12 months. No benefits whatsoever !
Nice post Doctor G. I always like the cost/benefit analysis argument when it comes to any DMD whatsoever. If it costs you more in terms of money or (potentially) disability than its (probably/possibly) worth in terms of benefits, then just say no to the drugs.
Sue
Why not send Gwen Higgs a PM and see if she can help with the information you seek? She strikes me as being a level headed person with both PPMS, and experience of HSCT, so fits your criteria nicely.
Not suggesting this is the answer for scientific evidence, but you might get an indication of what is possible.
You are obviously aware of this thread.
https://community.mssociety.org.uk/forum/everyday-living/hsct-treatment-yes-or-no-0?page=1
Both Gwen Higgs and Mindy Watt are great supporters of HSCT for progressive MS. Think Mindy had SPMS and Gwen PPMS and both say that their progression of the disease has stopped and they have also had some beneficial improvements. You should join the HSCT UK facebook group forum - there is also one for PPMS/HSCT.
Also have a look at this blog from a woman with PPMS
Moyna x
I live just outside glasgow , within glasgow there is a MS charity and they have HSCT as part of their service why dont you search in your area to see if there is any MS charities providing this service
trish
Hi Trish
i also live near Glasgow! Which charity has HSCT as part of their service ?
John
Just a guess, but there might be some confusion with Hyperbaric oxygen therapy, or HBOT
I thought exactly the same thing. So many abbreviations …
[quote=Moyna]
Both Gwen Higgs and Mindy Watt are great supporters of HSCT for progressive MS. Think Mindy had SPMS and Gwen PPMS and both say that their progression of the disease has stopped and they have also had some beneficial improvements. You should join the HSCT UK facebook group forum - there is also one for PPMS/HSCT.
Also have a look at this blog from a woman with PPMS
Moyna x
regarding the future - no difference between PPMS and SPMS
I have just read an enormous amount regarding HSCT, one particularly compelling read is at the following link; The Cure for Multiple Sclerosis: Getting into HSCT treatment if you have MS
Obviously the cost is prohibitive for most, but if there is a means to raise the money, why wouldn’t anyone give it a shot… Yes it may mean travelling abroad to receive treatment, a massive inconvenience to family etc, but has to be worth it. The success rate seems to be great and to be fair it makes perfect sense… Rid the body of faulty stuff and start again.
I have no idea where my upcoming appointments will take me, but knowing that there is a treatment out there which can possibly, if not more than likely, halt any progression, then how could it not be pursued. It may be a temporary halt but surely any number of years where no decline takes place, would make it worth every penny and more.
It is possible to get HSCT on the NHS, but the criteria is strict.
http://multiple-sclerosis-research.blogspot.com/2016/01/london-ms-ahsct-collaborative-group.html
But this guy’s understanding of the fundamental processes of MS is wrong. I’ll quote from the page linked above
“The first HSCT protocol is a “myeloablative” chemotherapy protocol that effectively eliminates nearly the entire in-vivo B- and T-cell lymphocyte population of the body. (These are the self-intolerant immune cells that are attacking one’s own body that causes MS symptomatic progression…|”
MS symptomatic progression comes with the death of nerves that have been de-myelinated in the past by B- and T-cells. It doesn’t come from the attacks of B- and T-cells themselves. I don’t think there is any controversy about this - I’m sure someone will tell me if I’m wrong.