hsct treatment-yes or no???

I’ve been researching so much into this hsct treatment and there has been so much all over the Australian news last few days about one lady’s journey and the wonderful results…question-y is more people not thinking of doing this treatment?what’s stopping them? Am I mad to want to do it?

Xx

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It’s refreshing to be called this with a ‘name’ instead of an Anon

So your Neuro embraces paying for the unknown and not waiting for a treatment NICE endorses? how responsible.

Any how.

There was a stem cell treatment for an eye condition done in the UK witch success as in they could see light flashes not full vision, they had to keep having repeated tests to check the stem cells injected into the eye stayed in place and did not turn into other bad cells.

Having 3 viles injected into main artery so it can travel anywhere untreated and not programed(guided) is a wildcard in my book.
3 viles is not going to go very far in repairing. Then what? and if it all goes south what happens then.

Did anyone mention or give any thought into stem cell shelf life. How long do they float around the body?

hi, i am currently saving up for hsct at the moment.

my opinion is that hsct is the treatment most likely to achieve the results i desire. ie. stop MS.

as far as i know the major deterent in getting this treatment is its cost. ranging from 35K to 100K depending on where you get it done.

Another deterent is the fact that it is not as widely studied as other MS treatments. There are however small trials that have results published suggesting it as a positive treatment against MS.

i dont have nearly enough facts on it as i would like, what i do have is a lot of time to find out more before i come up with the ham.

Not posted on here for a while but the last time i did it was related to this topic. Not many people had positive things to say reguarding it. There are a few different types of HSCT, different protocols available at the various centres that offer it and with these protocols comes a risk.

Dont want to seem like a HSCT “pusher” but when i take the gravity of the situation into account i am willing to accept a risk. For me at the moment, i am doin well healthwise, still havent felt the same since the first lapse, but i am unwilling to become complacent and think that MS will just simply disappear. For me its a battle and i’ll throw everything i possibly can at it.

Hi, I had this treatment in India last year. Feel free to message me about it…

In my 42 years of having MS nothing excites me more than the thought of Human Stem Cell Transplantation and the promise it offers.

I repeat ‘The promise it offers;’ yes it is still a few years away but if you want to chance of going to one of these clinics who offer this untried treatment and charge shed loads of money it’s up to you; I would not.

Will everyone realise as soon as money is involved that becomes the motivation not the welfare of patients. How many people have adverse results as opposed to this one person in Australia?

If you have been researching HSCT do you know about ACTS in Amsterdam giving Pig Stem Cells and other various clinics. Apart from the unknown it may do on your body it is likely to turn you off ever having this treatment again if it’s unsuccessful.

I know your frustration; in 1982 I went to Miami for Snake Venom Treatment against medical advice. It without question saved my life and still use it today 32 years later. It only costs me £100 for 5 years supply so I don’t think I’m being ripped off and if it’s placebo so what!

I’m not saying “don’t do as I do; do as I say” there is far more to SCs like how do you stop them replicating causing cancer?

Wait my luv; shouldn’t be long.

G

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Writing on hsct, rosex said:

That’s threee questions!
So for the first two … this is a very, very, very, high-risk procedure. That’s why.

There was a lady up in Nottingham called Stella. She wanted it done, and for a long time many of us followed her story, and her blog (on another website, but with updates posted here). I have been unable to find anything since 2012 - she got slower and slower to update.
She ended up deaf, minus several fingers on her left hand, minus most of her toes.
This was done in a reputable London hospital - not in some dodgy “clinic” somewhere in the far east.
SO - HIGH RISK.

If you Google “Stella hsct blog” you should find your way to the right page on the MS-UK website and you can scroll down to find Stella’s story. Everyone thinking of hsct should read this - and then think long and hard. To be quite fair to Stella, there are medications available now, that were not available just a few years back. Her decision might not be the same today.

As for your last question … well, I know what I think. Guess what I think.

Geoff

How can you lose your toes via HSCT? (serious question).

Yes it would be nieve to think that all will go fine and dandy after every HSCT transplant. This is a big roll of the dice. Know that.

Heres what id like to believe:

  1. london is not the medical epicentre of the world

2.With youth on your side it will increase your chances of success

3.The other thousands of people that claim to have had this done are in fact real people.

Serious questions deserve serious answers, Raymond.

The quick answer is Necrosis.

You do understand that the HSCT treatment screws up your immune system in a really big way, I hope. So what you get with it is a need for a specific sub-type of blood if you ever need a transfusion (it must be irradiated).
Read Stella’s story on
http://www.ms-uk.org/files/Stella.pdf
Look at the entry for Jan 6th 2012 - that will show you what her toes looked like before amputation.
Read the whole story very carefully - including the point where she was given a 5% chance of survival. And read the bit about being on dialysis. And the bit where one of her finger joints fell into her breakfast cereal. And the bit where the antibiotics did her hearing in.

Of course, she was young, and enthusiastic, and did not want another relapse. Just because you cannot have it done on the NHS at your local hospital does not mean that it is a good treatment - see the comment above from ggood about the Dutch clinic using animal cells.

Now, where are these “thousands” of people who claim to have had the procedure done - and how do you know that they are “real people”? One very-pro HSCT website I looked at suggested that it was maybe 600 worldwide.

Geoff

You do know HSCT does not stop MS if you watch the video’s on youtube of the people who have had it in America years ago are still told they need to continue a DMD.

If your lucky it might repair myelin but how much damage do yoy have and how many stem cells would it take to repair that damage, also what happens to the stray stem cells that don’t turn into myelin cells what do they turn into, also what is the mutation rate and what cancers would this lead too.

If you don’t believe me ask your neuro and save your money and wait NHS are doing another phase trial shortly worth waiting for outcome!

Stella EDSS scale improvement after a year and losing toes, going deaf was minimal.

Hobs…do you have the link pls? There is a hsct group on fb where loads of ppl have had it done with great results…is all that lies? I don’t no what happened in stellas story and y these terrible things happened because of the hsct but has there Been other cases which have had bad results like this or was that a terrible tragedy because procedure not preformed properly? I’ve been in contact with a doctor in Russia who preforms this treatment with wonderful results. All I no is ppl say the earlier preformed the better,before my ms progresses. Obviously like all of us I’m terrified of the unknown…What’s to come…ms sucks!!!

Here is Stellas pdf blog scroll to bottom and work your way to the top.

http://www.ms-uk.org/files/Stella.pdf

Wow I tried to find a real video on a somoene who had stem cells and she said her neuro wants her to go back on rebif but I cant find the video all up now are on hospitals with people saying how wonderfull it is after 3 injections told to use hospital gym?

Erm it don’t work that fast lol.

All them wonderfull results show me a video where you see someone in a wheel chair or using a walker then had stem cells and is walking up stairs etc.

Anyway on the first phase trial the dr’s took stem cells from thigh bone then wiped out immune system (reset) then massive canular on artery on heart and inject there.

People who have had Mitox for immune reset still take a DMD when their immune system grows back the MS is back again maybe on some it’s not as bad but hey I’m just saying.

Putting stem cells back into the body does nothing for changing the immune system its not gene therapy. Which is what USA is working on and B cells supression.

With youtube in 2 years I’m surprised at all the Sales Marketing with hospitals and clinic videos it’s all hype if it was a cure it would be all on the news and MS National website would have pages on it.

Its hard to find a real person now and they all sitting in a chair with minimal movement yet say how wonderful it is well show me dance etc !

Also I asked my neuro about it and he said its early early days and risky with no guarantee on repair also you do have to take a DMD afterwards like I said before.

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As important a milestone as the FDA-IND approval is, it marks the true beginning and not the end of our clinical research of stem cell therapy. In this and subsequent studies, we hope to define the optimal therapeutic dose and dosing frequency of stem cells, the best route (or combined routes) of administration, whether or not stem cells should be used in combination with other disease modifying treatments, and which patients are most likely to benefit from this treatment.

I go 12/06/14 to Moscow. I didn’t take notice of negative people on here, I did my own research. Everyone should x

Ive replied to this with a link to the fb page and been told its being looked at by the mods. Hopefully people will see it, if not feel free to pm me for info. We are not all as blinkered as certain people on here. I go to Moscow for hsct june 12. Steve x

Blinkered?? LOL all this reminds me of ccsvi and look what happend with that!

So my Neuro is also Blinkered? whatever

I look forward to seeing your break dancing video a year later.

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i have to concede that more research must be done by myself before shelling out the dosh for hsct.

ive read lots of serious words against hsct here on this form, but i will not shut the door on it just yet.

Is HSCT not just chemotherapy? (is say just lightly)

Do cancer patients not go through the same process?

Am i way off track?

I completeY understand everyone’s concerns,it is not something to jump into lightly,it’s a year since dx,I’m 27 so just looking at all options…I feel like just another number to my neuro…nurse…they are happy to let patients follow the accepted safe path but unfortunately if you end up in wheelchair your just another person in a wheelchair,it doesn’t really matter…to them. I feel like need to fight for my quality of life as no one else is :frowning: no neuro will promote hsct yet as not 100percent proven but y is it been preformed on more and more patients here is uk…they are usually very severe ms cases but there much be some benefits in it? hsct atm seems the most promising treatment. I am trying to get a appointment to speak to a heamotoligist in London guys hospital atm to find out more about it. No harm in finding out more.

Raymond some people who have had Mitox have been known to nip MS in the bud so to speak can can last 10 years, It don’t happen with everyone and you can get this on NHS.

Some who have Mitox continue to have a active MS and still need a DMD.

In a year + the latest UK trial results with HSCT will be out so why not wait?

People have had good results on Campath also.

Bottom line is MS is a autoimmune disease and a re programming needs to be done to tell it to ignore myelin and stop
attacking it.

Injecting stem cells is not going to do this it’s not blinkered, I don’t fall for Sales and Marketing Videos or Facebook brainwashing
goups playing on desperate people. I listen to a well known in the field neurologist.

I was on the phase 1 list years ago and I asked the Dr in charge ‘would the stem cells repair my pancreas as well?’ and was told possibly.
Years later I learned my immune system is attacking my pancreas cells that produce insulin so if you whiped out my immune sytem my pancreas should produce inulin again.

Stem cells have nothing do with it.

Here is a interesting news a well known Neurologist says “The cause of MS – a combination of genetic factors and environmental factors – still needs to be determined. Repair to MS-related nerve damage using stem cell therapy is I think, five to 10 years away.”

(Ha @ Goat serum)

They also want to find away to force stem cells to turn into Myelin cells at the moment its pot luck with what they will turn into.

I bet the next Fad will be radiation therapy for MS (which I’ve had as part of a study)

Pay to go to chernobyl for a week and stay at the Luxury 4 star hotel ‘The Hobs Court Hotel’

I can understand that. but speak to a heamotoligist and neurologist in London not he said she said on Facebook sponsored by Putin Clinic or Patel Clinic or Mr I found a cure for MS PM me and I tell you the secret neurologists don’t want you to know.

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