Last reply 1 year ago
anyone else leaning towards HSCT?

Hi guys, normally im in the background quietly reading your posts around whats going on. Ive been reading everything Caroline Wyatt’s written on twitter since she went to Mexico for hsct. On Tuesday she had a page in the daily mail and it just made me smile. I find myself thinking more and more about this possibility daily. Was wondering if anyone else is finding they’re leaning more and more toward this? Have a read, hopefully it will make more smiles… Adam x

http://www.dailymail.co.uk/health/article-4266082/My-43-000-stem-cell-therapy-Mexico-transformed-me.html

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stumbler
1 year ago

It does sound encouraging, @adamski .

I’m just checking down the back of the sofa whilst I amass the £50k needed. And, once you’ve spent this out, ATOS/Capita will pop round and nick your disability benefits.

It could be a waste of money or a loss of income, whichever it would impact my financial well-being! 🙁


adamski
1 year ago

I understand what your saying @stumbler but looking at the cup being half full… If the money was there, it was successful and halted the ms and in some cases its improved things. then i’d like to think I could get life back towards how it used to be. Then there would be no need to worry about ATOS : )


stumbler
1 year ago

@adamski , I’m just being old and cynical.

And what’s all this cup half full. The cup’s the wrong size! 😉


shaunlawrence
1 year ago

Hi I am new to this site but just read the HSCT comment and wondered if you good people would be interested in my own experiences with stem cell treatment without the need for chemo for approx half of the cost. The results have been amazing my walking has improved, and many symptoms have disappeared . I am 80% better , which has amazed my negative neurologist the same one who advised against having the treatment. I realise that the cost is a big issue and I did alot of fundraising to fund my treatment, i felt that time was against me and my condition was worsening at an alarming rate. I am 52yrs old and have never accepted the advice of my neurologist that nothing more could be done, neither have i ever accepted the fact that my deterioration would get the better of me. There is hope for future treatments and i believe to remain positive is essential to surviving and beating this disease. Happy to be messaged by anyone who would like to know more, i will help anyone who is interested in looking into this treatment without the need for chemo. It is now 12mths since my treatment, my progression has stopped and my improvements have lasted!!
Stay positive people.


adamski
1 year ago

@stumbler I would never class you as cynical, but the old… 🤔
You give so many on here knowledge from your fountain every day, a big reason lots of people keep visiting…

Also consider reading Dave’s story. Its moving and very detailed on the whole process. He was one of the earlier ones to get this done and talks through all the steps and is now more then 5 years in.

http://forums.activemsers.org/forumdisplay.php?f=6

Its a procedure I have been researching a while. Apparently there are several ways the cells can be harvested and there are pros/cons to each of them. It also seems that the earlier you do it the more effective it can be. Its also the case that the proceedure seems to be improving so there are some benefits to waiting (but of course a cost to waiting as well), so timing these things can be tricky.

There is one drug I am eagerly awaiting the results to this year that I have no idea how likely it is to succeed but would possibily be a serious contender to HSCT and every other DMT (based on safety and effectiveness). Here is the companies presentation (its a investors deck, but information otherwise is pretty sparse as far as I can tell):

https://www.geneuro.com/data/documents/GeNeuro-presentation-January-2017.pdf


doubleo7hud
1 year ago

Have you lot got a cup, i think I smashed mine on a drunken night out in my younger days there was feck all in it then 3 baby’s later I use a egg cup now and that too is always empty


stumbler
1 year ago

kinga
1 year ago

Have a look at Poland – its much cheaper and not a 3rd world country
Im Polish and I find medical care better there than here (UK)

@stumbler those are both good links and there are a few more but for some reason none of the articles cover the theory on why it might work and the actual numbers of what they did. It seems incredible if it works and they have some good theory on why it would work. If you don’t mind reading through the PowerPoint I posted would love to get your thoughts. Am I hoping too much?


stumbler
1 year ago

@stumbler that’s from 2014 and they have a bunch more data now. They moved the phase 2 completion date sooner (October of this year possibly) implying potentially things are looking good. Professor G doesn’t seem to talk about it anymore on Bart’s which makes me wonder why.


caterpillar
1 year ago

I would definitely consider HSCT if it was a real option – it is not offered routinely here and they do it only as part of a clinical trial in Bergen at a rate of a few patients a year… and then I am too old for it already (!!!).
So I am going for the next option on the list, starting on Monday 🙂 – it is Lemtrada. Wish me luck as you wave me goodbye… 😉


stumbler
1 year ago

@californiadreamin , there’s a few recent-ish articles here :-

https://multiplesclerosisnewstoday.com/?s=gnbac1

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