The only one real cure for MS

[shucks]

I was just diagnosed, but it turns out that all of the health problems I have had since 2004 that were diagnosed as sprains/pulled muscles were really effects/exacerbations of MS in my spine. Now I feel like I am getting worse, and kind of lost. I was just told that I qualify for further review in the study at northwestern if I go on a DMD for 6months and reapply in december, so I am hoping to start Copaxone next week for 6months and reapply. Some business men in town and I are starting a foundation to help local professionals who are stricken with these sorts of things. I am really hanging all of my hope right now on this treatment, as I went from perfectly healthy, walking through miles of woods/swamps hunting, to barely getting back and forth from the car to the office in 7 months. I hope this foundation will accept me as the first beneficiary and then, with luck and hope, go on to help others.

[rstowhee]

please read new thread I started. warning folks of stem cell therapy not being controlled well enough at this point in time. Will it EVER work? SOMEDAY, YES!

Fishhead, I know dozens of people who had stem cell 'treatment' ... without chemo. There is very little risk with SCT and there is a chance it might help.

Guess I'm confused as to why you'd discourage pwMS. Same goes for CCSVI treatment. There are risks with everything so each person has to decide for themself.

SCT in Israel and Panama is safe. Will it help...who knows. Can something bad happen...sure, but I could fall walking in my house, hit my head, and die. That's a risk I face every time I want to walk from one place to another. Life is a risk.

[soccer3]

sct in chicago

is the clinical trial they are doing free. I live in Massachusetts and have been on every drug and treatment with no luck.
I really feel resetting our immune systems is the way to go. How can I get more info on this?

[shucks]

It is not free. I think it costs about 150k to get it, if you ge through the type of clinical requirements that only dr's can come up with. I am going to apply again once I have been on copaxone for 6months. Some insurances will cover part of it, but it seems to be rare. You can get it done in germany or israel for around 80k euros, which is 90-100k. I am really interested in it, I am just trying to meet more folks who had it done to get their stories. My community has started a foundation to help me get it.

[bubbadan]

Check out mRNA new procedure.

[shucks]

I have not heard of it. What is the deal? So far, It seems Campath and HSCT are the only treatments that have any potential recovery of function. The current HSCT technique uses the same drug in campath, but much more of it.

[georgegoss]

Check out mRNA new procedure.

The only term mRNA that I know is "Messenger RiboNucleic Acid" which is involved in the DNA replication process of all living organisms and has little to do with MS disease activity.

Is the mRNA you are referring to some form of "brand name" or slang for something else? If so, can you point us to the source?

Thanks in advance.

[georgegoss]

My current 18 month post-transplantation status update. In my book it still unquestionably qualifies as a cure. . .


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[lucifer1306217]

(Please excuse me, my understanding of this is pathetic...)

Calling it a 'cure' is a bit disingenuous, isn't it? You may get a "fresh" immune system so to speak, but that does not mean that whatever caused your immune system to go haywire in the first place has been fixed. It could just as likely occur again, correct?

So it is more accurate to call it a 'promising treatment' as it stands now, correct? We will need to see the long-term effects of this treatment, which will take decades...
Reply With Quote

[shucks]

I can understand George's take on it being a cure, though I wont call it that. For the people it works for, at 10year, it has still been successful in stopping progression. That is as far as the records can really show. It is my goal as we sit to get this treatment done in december or January. It is the only proven treatment that stops progression for that long, and is the only treatment that there has been where people can recover any amount of what this disease has taken from them.

[georgegoss]

(Please excuse me, my understanding of this is pathetic...)

Calling it a 'cure' is a bit disingenuous, isn't it? You may get a "fresh" immune system so to speak, but that does not mean that whatever caused your immune system to go haywire in the first place has been fixed. It could just as likely occur again, correct?

So it is more accurate to call it a 'promising treatment' as it stands now, correct? We will need to see the long-term effects of this treatment, which will take decades...
Reply With Quote

There is no universal definition of a "cure" for MS. Even doctors and researchers cannot all agree. So therefore its up to each individual to decide for themselves what a "cure" is.

For me, my definition of a cure is to completely stop the underlying MS disease activity & progression, which I have unquestionably accomplished. Following this I have additionally seen a 40% reversal (improvement) of all my pre-existing symptoms that had accumulated before my HSCT treatment because my body has been able to heal a portion of the damage that is not undercut by further MS disease activity. So this completely supports my legitimate right to claim that I have been "cured" of MS. Admittedly you may not have the same definition for yourself, so my "cure" status may not translate to anyone else that has a different definition. Some people may insist the definition of a cure erase all previous traces of MS symptomatic accumulation. If so, then that's an individual decision, but not mine.

Just a last note. . . I am not in any way being disingenuous in my use of the term "cure." I am cured because my disease is confirmed 100% stopped (as it does with the overwhelming majority of HSCT-treated patients). This is not just a "promising treatment." The enduring curative efficacy of HSCT on MS is a well-established statistical fact. I make no apologies for my use of the nomenclature.

[DianeD]

Stem Cell therapy

My nephew's wife who is about 37 had a stem cell transplant for her Non Hodgekins Lymphoma. The chemo was brutal and often people don't make it through that stage. A friend who was 58 also had this and died during the chemo stage.

My nephews wife made it but it was very hard, not just physically but mentally.

My intent here is simply to point out that the stem cell transplants are miraculous, BUT I think they are only relevent to those who are young and in good physical shape.

Personally, as the procedure is today, I don't think I'd make it, but sure hope they can get to a point where the procedure is easier. I do believe in stem cell therapies and I think they will be very important in curing many diseases.

Diane

[georgegoss]

My nephew's wife who is about 37 had a stem cell transplant for her Non Hodgekins Lymphoma. The chemo was brutal and often people don't make it through that stage. A friend who was 58 also had this and died during the chemo stage.

My nephews wife made it but it was very hard, not just physically but mentally.

My intent here is simply to point out that the stem cell transplants are miraculous, BUT I think they are only relevent to those who are young and in good physical shape.

Personally, as the procedure is today, I don't think I'd make it, but sure hope they can get to a point where the procedure is easier. I do believe in stem cell therapies and I think they will be very important in curing many diseases.

Diane

Hi Diane,

You highlight a very important issue. . . . Hematopoietic Stem Cell Transplantation (HSCT) is a serious medical procedure not to be taken lightly. Clearly some thought needs to go into it before deciding to move forward with the procedure for individuals with MS. Since cancer patients would likely die without the procedure, it seems to be a no-brainer to do it. But with MS, death is usually not the alternative, just probable further disability. Its really about Quality of Life.

I just add a few additional comments (meant to be informative, not argumentative). . . . .

- Sorry to hear about your nephew's wife with NHL that underwent HSCT. Its definitely an uncomfortable procedure (agreed both mentally & physically). Been there, done that.

- There are literally dozens of different chemo protocols used for the various types of HSCT for cancer treatment. It's possible that your nephew's wife had an especially agressive treatment protocol that might possibly be quite disimilar to the protocol used in the treatment of MS.

- The modern-day HSCT chemo treatment protocols for MS are actually rather "gentle" as compared to many cancer treatments, both in severity and duration. So it's difficult to directly compare treatment experiences with those undergoing cancer treatment. (Although admittedly, they are at least similar.)

- Since the start of the phase II HSCT clinical trials for MS (begun in 2003) and now continuing into the current phase III clinical trials, not a single MS patient has died as a result of the treatment. Absolutely none. So this seems to indicate that the current mortality for HSCT treatment of MS (with the preferred protocols) is a relatively safe procedure. At the least its not wildly dangerous. Even supposedly safe CCSVI treatment and stem cell infusion therapy can't match the HSCT safety record.

- I am aware of people in their 60's currently undergoing HSCT for the treatment of their MS. So long as a person is otherwise generally healthy, I suspect that age has little bearing on the treatment outcome. (Disease status is a far better predictor of treatment successs in which performing the procedure earlier in the disease cycle is usually better as compared to later).

- When you say "Personally, as the procedure is today, I don't think I'd make it", I actually think you might do much better than you expect. So far all MSers (including me) have made it through the HSCT just fine and now at 18 month post-transplantation I can't even remember feeling ill for the week I was. Sometimes I have to go back to my blog to remind myself what it was like since I have nearly forgotten the negative aspects of the treatment. I share the same post-HSCT attitude nearly all others that have also done it. . . no regrets. I wish I could have done it earlier.

My sincere bestwishes for your good health and for the good health of your nephew's wife.

George

[georgegoss]

Sparky, I'm not sure why I need to be warned. You appeared to address the use of "cure" in a negative fashion when its been used in this thread from the first post. I'm certainly not being disrespectful, I am just curious what was meant by your statement of yesterday. Are you saying "don't use the word cure"? Don't argue about whether something is a cure? I'm just confused as to what's off limits.

Steve, speaking for myself I am totally comfortable with you and others not agreeing with my definition of the word "cure." Civilized people can respectfully disagree.

On the lines of the same subject. . . . I have started an informal poll on my blog as an attempt to gain more insight as to what a broader range of MSers would consider a "cure" for their disease. The majority of the ealy responses seem to be bifurcating into two main camps. On the one end of the spectrum people are indicating that they would be happy with just "stopping" the progression of the disease (which is my own personal definition of what I wanted out of an HSCT cure). And then on the other end some people are indicating that in addition to stopping the MS progression they would only be happy with total erasure of all symptomatic accumulation of their MS (making it impossible to know they ever had MS). And then a lesser number of people fall in-between in which they would be happy with a MS cure that stops the progression of their disease and reverses/improves some of the accumulated physical deficit (which is the most probable outcome for most people receiving HSCT which includes my own experience). I'm looking forward to collect the answer statistics over a longer period of time and larger number of respondents to see if this changes.

The takeway I get from this is that there is no consistent agreement amongst any group of people that can establish the definition of a "cure" for MS. (And the dictionary is no help, either.) So as far as I can tell regarding the definition of a cure for MS. . . to each, his own.

[skreynolds57]

George, for me cure would have to include repair of nerve damage, not associated with stopping the disease process. Just plain old repair. We know that when the disease process stops the body will repair (remylinate) fully in some cases or to some extent and a full or partial restoration if normal function can happen.

Its a whole other issue, not related to inflamation or attacks. I can't or won't use cure without that included. Progression related to nerves "rusting" away, slow for me, rapid for others. No attacks in sight