Whyare people so uninterested in having SCT?

[Katje]

You didn't mention how aggressive and how far along your MS is. Do you have a lot of disabilities, or are you just wanting to hold damage where it is now.

incidentally, I don't know that much about it, but it seems the procedure gives you a new immune system, which in theory would stop the attack on your nervous system. I'm not clear though if there is any recovery, just more like removing the drunk driver who's hitting parked cars and denting up the car, from the seat and putting a sober driver in. The dents and scratches don't go away, but there are no new ones.

If it's the case, you might want to look at Lemtrada before you spend the money and take the risks. Lemtrada has some risks, but it's the closest thing to a med that stops MS activity (Relapsing Remitting, I think)

My MS stayed silent for years, but in the past 2 years I have been getting attacks and now for the first time I am starting to get left sided weakness, fatigue and I have new lesions plus the old ones are growing.

I Been at this for too long watching others who go downhill using the current dmt's. I won't be one of them. if I do nothing, nothing is going to happen, do I decided to do something.

[Thinkimjob]

Well, here's the question I've been asked all day, "Why don't you go to Russia and have that stem cell treatment; it fixed that woman up completely?"
The story was on 60 Minutes in Australia on Sunday night.

"She was in a wheelchair and now she's running! It's so great, it's a cure."
There was an awful lot of "MS may kill this brave mother unless she undergoes this treatment" high-stakes emotional stuff. But that's the media.

I've had a lot of "I didn't realise this was going to kill you. You're sooo brave", too. Yeah, right.

Why not? Too disabled, too expensive and too risky. Also at the risk of sounding xenophobic, too Russian. (I'm sure their medical standards are perfectly fine, but how high are they?)

And the other thing, if you have relapsing-remitting MS, how do they judge whether the treatment worked or you've got just into the usual remission part of the cycle, particularly if they want people who have not been diagnosed for too many years and who aren't too bad, all things considered?

Are they judging success based on MRIs or position on the EDSS?

I was in remission for 8 years.

The main reason is I don't need the disease activity stopped so much as the damage done by the disease repaired.

When they can do that, I'll pony up.

But to all who are willing to give a try, I truly hope it delivers what it promises.

I think that it is delusional to think that people don't want something that is CLEARLY unobtainable to the vast majority of MS patients.

[dyin_myelin]

My understanding is that you have to completely ablate the old immune system in order for it to work, and that means high risk chemotherapeutics. I've read about many people getting treatment resistant leukemias from chemotherapy, and that it just buys people with cancer time. I don't understand how SCT w/o chemo would work, so if you could explain that I would consider it. I asked this before in a SCT thread and got no response.

If the data is there that it is effective and you can do it without frying your immune system with poison, then no, no monetary cost is too high. However if it's only available in dubious overseas treatment centers and hospitals that is also a big no. My risk tolerance is pretty high when it comes to counter-attacking MS but still measured.

[misslux]

Even if I were RRMS, still currently a "no" due to efficacy, risk, cost, and not entirely trusting overseas centres.

As for cost factor, I agree with Ceremony that this is unobtainable for most MS patients. Realistically, not everyone has the money, assets, credit history, etc. to be able to afford to have this done outside of a clinical trial. And even if a clinical trial were available to me, I wouldn't have the time or money to not work for the period of time that the treatment and recuperation takes.

[misslux]

And the other thing, if you have relapsing-remitting MS, how do they judge whether the treatment worked or you've got just into the usual remission part of the cycle, particularly if they want people who have not been diagnosed for too many years and who aren't too bad, all things considered?

Are they judging success based on MRIs or position on the EDSS?

I have been wondering the same thing!

[Mable]

how do they judge whether the treatment worked or you've got just into the usual remission part of the cycle

I think that's why scientists do trials, comparing a treatment group to a non-treatment group, rather than comparing an individual's before condition to her after condition. The overall numbers will show the effect.

If I were in your shoes, Katje, I would be looking at something more risky too. Currently, I'm 52 and haven't had any disease activity since diagnosis and starting Copaxone two years ago. Nobody anywhere would put me on Tysabri at this point, let alone Lemtrada or SCT.

But I'm well aware that my quiet brain could change. And the minute it does, I don't plan to mess around. I think I would try to get Lemtrada, especially if I can wait a couple years to see how people who are getting it in other countries (where it's legal) are doing.

Early is better, of course. But like I said, nobody is willing to put me on a more aggressive treatment at this point. Often, I wonder if being safe is going to lead me to progressive disease unnecessarily.

[football-mom]

Marco expressed my feelings much better than I did. The treatment isn't ready yet and I have no interest in mortgaging what good years I have left to pay for an experiment. TThere's potential in it, but its nowhere near proven enough for me to even give it a second thought. But if you're really into it, then please go for it. You may end up helping lots of people.

[Kimba22]

I don't think that people are not interested. Quite the contrary. I think it's a very expensive proposition for something that may not work, and most people don't have those kinds of resources. Even if you can muster up the funds, it may still not be feasible to travel away from family or for any extended period of time. And it's too far out of my comfort zone to travel to a foreign country for any medical procedure, much less an experimental one.

I am not convinced we are quite there yet, but it sounds more promising for those who have RRMS. It's another story for those of us who are not in the inflammatory phase of the disease. Here is a video (December 2013) I came across about stem cell research that will explain why. It is about Transverse Myelitis, but MS is also discussed near the middle and very end of the clip. I found it very informative and explains the types of hurdles they are working to overcome. http://www.youtube.com/watch?v=tDJBl2_0_Jc

Best of luck to you, Katje!

[Katje]

Well, here's the question I've been asked all day, "Why don't you go to Russia and have that stem cell treatment; it fixed that woman up completely?"
The story was on 60 Minutes in Australia on Sunday night.

"She was in a wheelchair and now she's running! It's so great, it's a cure."
There was an awful lot of "MS may kill this brave mother unless
she undergoes this treatment" high-stakes emotional stuff. But that's the media.

I've had a lot of "I didn't realise this was going to kill you. You're sooo brave", too. Yeah, right.

Why not? Too disabled, too expensive and too risky. Also at the

risk of sounding xenophobic, too Russian. (I'm sure their medical standards are perfectly fine, but how high are they?)

And the other thing, if you have relapsing-remitting MS, how do they judge whether the treatment worked or you've got just into the usual remission part of the cycle, particularly if they want people who have not been diagnosed for too many years and who aren't too bad, all things considered.

Are they judging success based on MRIs or position on the EDSS?

I was in remission for 8 years.

The main reason is I don't need the disease activity stopped so much as the damage done by the disease repaired.

When they can do that, I'll pony up.

But to all who are willing to give a try, I truly hope it delivers what it promises.

I saw that too where they state she was slowly dying from MS.
Oddly I talked to Kristy throughout the whole thing and not once did she mention she used a walker or was that bad off. She said she has some residual left sided weakness. She also told me she was going alone, she failed to mention she wasn't alone she had a camera crew with her. 60 minutes may not have paid for the

treatment but she is getting money from interviews etc... so her treatment was covered.
She had to contact them before hand since they were there when she had her hair cut off etc... Smart girl.

As for me I can have this done in Chicago and they don't feel I had it too long or too old. On 60 minutes they stated people should be under 40 and early in the disease. Sounds like they got a lot of
information from Kristy and not the doctors.

Dr. Burt has been doing this since 1992, the trial is on phase III. Most trials never make it that far. It has shown to be highly successful so far and honestly I am tired of dealing with MS and I am getting older and running out of time as far as treatments go.

The older you get, the less you qualify for many new treatments and I dont want to be 60 or 70 and crippled someday saying oh
well I should have.

[Thinkimjob]

But Katje, love, your EDSS is 1.0. So it may be worth the risk, maybe. Maybe not. I don't know how bad that is.

I'm 43 and I am basically stuffed. EDSS, God knows, probably 6.5, 6.0 on a good day.

I'm looking more at foreign nation euthanasia one-way tickets these days.

Yes, no, not suicidal, just realistic.

[KatieAgain]

But Katje, love, your EDSS is 1.0. So it may be worth the risk, maybe. Maybe not. I don't know how bad that is.

I'm 43 and I am basically stuffed. EDSS, God knows, probably 6.5, 6.0 on a good day.

I'm looking more at foreign nation euthanasia one-way tickets these days.

Yes, no, not suicidal, just realistic.

Think- You and I will be meeting in Switzerland someday. I am a big believer in Assisted Dying, but not today, or the very near future. If you can be brave enough to go to Switzerland like I can, then you can be brave enough to try Tysabri for at least a year. I went from an EDSS of 6 to 3 because of TY. Not saying it will necessarily work for you...but please consider it one more time before any drastic measures are taken.

Katje- I missed it. You have had MS since 85 and only have an EDSS of 1? And you are 49? And you have two little ones? Darlin' you are doing really well. And good on you! Seriously. You are exceptionally lucky. I would not want to lose that either. I can now see how difficult your dilemma truly is. But it would be irresponsible of me not to tell you, my friend indeed died from the HCST procedure...he got an infection. I hope the doctors are being upfront on the risks with you.

[misslux]

Katje, I seem to have forgotten to wish you luck. I really hope it works for you!

EDSS, God knows, probably 6.5, 6.0 on a good day.

We are like EDSS twins!

[Katje]

I am sorry about your friend. There are risks however Dr Burt has not had one person die from his treatment. I don't know when your friend had it done, or if radiation was included or what his illness was. Dr. Burt does what they call a mini transplant.


I am scared I cannot lie, but I have been thinking about this for over a year. The pros and cons etc... I have not seen a death associated with MS who has this done. That makes me feel better.

[KatieAgain]

I am sorry about your friend. There are risks however Dr Burt has not had one person die from his treatment. I don't know when your friend had it done, or if radiation was included or what his illness was. Dr. Burt does what they call a mini transplant.


I am scared I cannot lie, but I have been thinking about this for over a year. The pros and cons etc... I have not seen a death associated with MS who has this done. That makes me feel better.

Thank-you. My friend had Leukemia...the HSCT was his very last option and he was accepted into a trial at Ohio State.

It sounds like you are in good hands, have given this considerable thought and have made a very informed decision.

I am excited for you. You are indeed brave. I wish you the best of luck and hope you document your journey here at MSWorld so the rest of us can follow with you.