This Is MS Multiple Sclerosis Community: Knowledge & Support

After reading a lot of articles and watching some of the lectures of Dr. Burt, I'm beginning to the think this must be the closest thing to a cure. So what are your thoughts on HSCT?


Dr. Burt Videos:-
http://www.youtube.com/watch?v=s3TgPFy1 ... BCA9190300

HSCT will almost certainly stop your disease progression and possibly reverse damage, but it's expensive and a little bit dangerous. There is a bit of mis-information spread about it by some people on this board, but the truth is that the death-rate is about 0.85%.

It is truly amazing what it can achieve, as some people on this board will attest.

Don't ignore other advancing treatments like Revimmune and Tovaxin tho, these will be available in the coming years and are safer protocols, but less effective.

It's just occurred to me that oyu probably already know this and I have typed all of this out for no reason.....

I would not agree with that. From what I have read about studies on HSCT it will be likely to stop the inflammation process (i.e. relapses and new lesion formation) but when it comes to stopping/slowing disability progression the data is not nearly as encouraging.

This is btw. in line with many other results obtained from immun-supressive drug-trials like for example the latest Campath trials, which do show a substantial reduction in relapses and improve MRI markers. But all these drugs dont seem to be that impressive when it comes to slowing the disability progression - and thats what ultimately counts, isnt it...

--Frank

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Treatment: CCSVI both IJV ballooned 09/2010, No DMDs, Tysabri on hold after 24 Infusions, after LDN, ABX Wheldon Regime for 1 year.

You clearly haven't read enough about it. HSCT tends to stop progression 100% in those with RRMS and a high majority of those with SPMS and PPMS. It does this by stopping the immune system from perpetuating myelin and axonal damage. This is what causes disability, thus if it is successfully stopped, so does the increasing disability. A lot of people have actually had a reversal of disability, up to 40%.

It amazes me that not more people on this board are interested in this and cling to the driftwood-like raft of CCSVI. It literally astounds me...

what if CCSVI is the cause of MS. the people who have had stem cell treatment might develope new damage because they never fixed the original problem - blood flow.

fix the blood flow then repair the damage with stem cells.

oh wait, what if healthy blood flow (ie a healthy brain) fixes the damage without stem cell treatment

Hi Viking,

could you please post a link to the studies that convinced you that HSCT stopped disability progression in the long term.

I would also argue against the point you made, that HSCT is costly.
Baseline/secondline thearapy is about 30.000US$ per year (+/- depending on the concrete drug used). How much does a HSCT cost? 100.000 US$? - I dont know. If HSCT would offer a long term solution it would be very cost-effective considering only the cost for the prescribed MS drug.
Left alone all the other additional cost due to an increasing disability burden accumulated over time, if you are not able to stop EDSS progression, as is the case with current treatment options...

Thanks!
--Frank

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Treatment: CCSVI both IJV ballooned 09/2010, No DMDs, Tysabri on hold after 24 Infusions, after LDN, ABX Wheldon Regime for 1 year.

Exactly, "what if" there is a lot of "what if" floating around here regarding CCSVI, because it is not proven to do jack. HSCT is proven to stop progression in the vast majority of cases, there are many studies which have already been posted on the HSCT threads and I can't be bothered to fish them out, but you are more than welcome to go and have a look for yourselves.

As for HSCT "not being expensive", I guess you have a spare 100 grand floating around, because your medical insurance won't pay out for it yet, I can assure you that. For most people, finding a spare $100,000 is just not an option, so to try to agrue that it's not a lot of money is just plain idiotic.

Well Viking, if you regard my opinions to be idiotic and dont bother to provide sources/evidence for your assertions, I dont think theres a point for me to go deeper into discussion with you.

Be well...
--Frank

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Treatment: CCSVI both IJV ballooned 09/2010, No DMDs, Tysabri on hold after 24 Infusions, after LDN, ABX Wheldon Regime for 1 year.

Luckily, George has collated lots of them here: http://themscure.blogspot.com/2010/06/s ... rence.html

I hope he doesn't mind me linking them.

This page has a number of studies, most importantly are Dr. Burt's phase III studies currently being undertaken at Northwestern University in the US.

I found your comment annoying because you said something which was totally pedantic, my claim that HSCT was an expensive procedure was accurate, $100,000 is a lot of money for most people. But you chose to compare it to the cost of a lifetime of MS drugs, which was a logical fallacy, because regardless of how much MS drugs may cost a year for your medical insurers, it has no effect of the $100,000 that one would have to pay out for the procedure from their own pocket.

Your comparison does not magically make $100,000 a small amount of money.

The fact that you don't know that HSCT has had remarkable succes in arresting disease progression also makes me think that you don't know what you're talking about, but still dishing out advice based on your faulty knowledge anyways.

Please look at the studies done in Canada by Dr. Atkins and Dr. Freedman. I will try to find a link. I would get HSCT in a heartbeat if I could afford it.

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Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy

from what i have read, HSCT is the best answer. it is the sledge hammer approach and there are no guarantees for long term success, but it is (imo) the best current option. hopefully, it will be approved by the insurance companies by 2020 or so as George suggests. 80-100k? what is your quality of life worth? i believe my avonex is in the 40k a yr range (to the insurance co.) and what kind of guarantee does that provide? nothing! but headaches and uncertainty. it is an will be the big pharms fighting this til the end. pay 80-100 once or 40+ annually? the insurance industry should be pushing for this...but...we know the rest of the story. lobbyists should be outlawed.