The only one real cure for MS

[DianeD]

Stem Cell procedure...

George, my nephews wife had chemo previous to the Stem Cell transplant. It didn't work; hence moving on to stem cell and much more aggressive chemo. Since the chemo destroys the immune system my nephews wife had to be in isolation, prior to and after the procedure.

The Chemo meant nausea, vomiting, etc. She also got pneumonia which is not unusual.

Another problem people often have is that their heart just can't handle the chemo process, which is what happened to our 58 yr. old friend (he had leukemia). I would likely not choose to try, but others might. I'm 66, MS has taken a toll and I have other issues. However it's one of those things that is a personal decision for each individual.

I also don't know if the stem cell procedure for MS is as rigorous as for lymphoma.

Diane

[ViLee]

ms and DNA

The latest genetic research for ms has caused me to rethink how effective chemotherapy or stem cell "reset" of one's immune system could be. DNA is DNA. Until gene therapy is also done you will still have the problematic HLA-DRB1, amino acid 13 mystery. Chromosomes 12 and 20 ? (Science Daily, August 2011, various)
As we are now coming to realize the causes, genetic and otherwise, and how imperfectly we understand them, I think that we should realize that a single approach is not likely a "cure".
Just sayin'.

[Torn]

More info please!!! Very interested!

George, can u give me more info on this. I am going to Germany and would be interested to talk to docs about this. Please!!!

[Branson Mom]

Stem cell therapy

So happy for you, can't wait to learn more about it although for me the $$$ isn't going to be possible to get it for myself but I sure am going to make sure everyone I have any contact with that has or knows of someone with MS will be able to get that info.

Thank you for caring and sharing.

Branson Mom

[rljohan]

Thoughts for a cure.

This has been such an intriguing discussion, but it is so far removed as a reality in my life. After one failure after another using most of the current disease modifying drugs, I still remain in a steady progressive state of which I have learned to adapt.

A couple of years ago I made a conscious decision to abandon the use of any MS pharmaceuticals. My rate of progression remains the same as when I was using CRAB or Tysabri. I must say that my quality of life has improved ten-fold as when I was using the medicine. Do I claim I have reached a cure? No, but in my mind, it feel's as if I have. I have become so adept at managing my symptoms, my life seems more in my control. It has not cost me a thing, nor is it costing me a reduction in my life expectency. Using a W/C, so what. Taking medication when needed for symptom relief, so what. I believe that whatever incapacitates me will be the result of lifestyle, long before MS takes me down.

I think I will wait for a well researched and generally accepted "cure" before I turn my life "topsy turvey" chasing the elusive ghost. Just one opinion.

[DianeD]

Tough to get the neuro's on board

I'm with you, though I've only tried Copaxone. I've felt lousy since I began two yrs ago. Nothing is better. The neuro I go to and probably most will only want you to follow the prescribed methods for relief (i.e. DMD's).

I'm thinking of quitting my C. The injections are tough, not so much as painful (though they are) but you start to find your skin is tough injection spots hard to find. I actually had a needle 'pop out' yesterday!

I have other health issues. I feel it is hard to concentrate on dealing with them also.

I'm older (67) but still interested in living life. I will take my injections till I see my neuro so when he does a new MRI he won't be able to blame new lesions on my quitting.

Hang in there; everyone is unique. Not everything works for all people.

Age definitely makes it hard to embrace some of the newer drugs. I am not going to take risks; I've talked to others on them who aren't happy as well as people like yourself who have tried many DMD's.

Keep up the good fight.

Diane

[Purtier]

Stem cell supplement

Salute your determination...keep it up.

[durgastiger]

early ms treatment only?

What about people in secondary and primary stages of M.S.?

[JerryD]

I think what you are asking is 'What about the people who are dx'd with Primary and Secondary Progressive MS?'. If this is what you are saying, the answer is that PPMS has nothing FDA approved and there are some studies being done for SPMS in the works. All of the drug approved for treating MS are approved for the treatment of Relapsing Remitting MS. That's what I have discovered over the last few years of scouring the internet.

[MizMeesha]

I found this an interesting read - discussion of treatments for progressive types of MS . It is fairly recent too, published October 2012.

http://www.uptodate.com/contents/tre...osis-in-adults

[fishead]

This has been such an intriguing discussion, but it is so far removed as a reality in my life. After one failure after another using most of the current disease modifying drugs, I still remain in a steady progressive state of which I have learned to adapt.

A couple of years ago I made a conscious decision to abandon the use of any MS pharmaceuticals. My rate of progression remains the same as when I was using CRAB or Tysabri. I must say that my quality of life has improved ten-fold as when I was using the medicine. Do I claim I have reached a cure? No, but in my mind, it feel's as if I have. I have become so adept at managing my symptoms, my life seems more in my control. It has not cost me a thing, nor is it costing me a reduction in my life expectency. Using a W/C, so what. Taking medication when needed for symptom relief, so what. I believe that whatever incapacitates me will be the result of lifestyle, long before MS takes me down.

I think I will wait for a well researched and generally accepted "cure" before I turn my life "topsy turvey" chasing the elusive ghost. Just one opinion.

I too, have been off of DMD's. I had my last Tysabri infusion August of 2011. A few flares, but controlled with oral steroids.

[JerryD]

After 100+ posts, this thread has gone pretty far afield from where it started. I have read all of it and have been amazed at all of your responses. You all show 'heroic' patience with the stupid medical system that we must tolerate, for better or worse.

The fact is that this thread was started by George Goss, an MS sufferer, like us, who just wasn't going to take this disease laying down. He had HSCT in Germany, where this treatment is also used to treat cancers. It has also been utilized in the U.S. at Northwestern U. by Dr. Richard Burt.
If I had my way, we would all (all 400,000 of us) be given our chance to choose this treatment and let the chips fall where they may. This disease is hardly tolerable as it stands and there is no reason why any 'deep pocket' would want to discover a 'cure'. Where's the profit in that ? When it comes to profit or philanthropy, which one will win in the business of MS ?
I wish you all Good luck !

[durgastiger]

Hi Jerry

I believe we will have a cure. Now is a good time with high people in power with many relatives suffering from M.S. If there is a cure the government would take over and distribute just like all other cures in the past.

I do believe we all need to come together all 400,000 of us. we need to move together write letters to certain politicians who work in our best interest and also doctors and researchers who all work for us.

[JerryD]

durgastriger,
I am in contact with George Goss, by email, infrequently. I believe there is something to be gained from HSCT. I don't know what will turn the tide for us, but I hope to get into a US facility that is doing the HSCT like George did in Germany. I am emailing Northwestern and the Cleveland Clinic for information. And I will be researching other possibilities asap. Good luck to you

[cgarri]

12 years out from HSCT and still improving

Hi all,

Looks like I'm two years too late to this thread. Wish George had told me he needed a 10 years out example in 2011. I had my HSCT in the phase I clinical trial in 2001. I was SP, EDSS 6.5 going in. I spent two years recovering from the Xplt. Then, I've been doing physical therapy four times a week ever since. Today, EDSS 5.5. Gee, one point, doesn't sound like much. Trust me, it is. Look up the dfinitions of those two scores and you'll agree.

I found the thread today because I was looking around for places to post this good news -- MRI has shown improvements in my CNS. Yeah.

How did I find out? Well, unfortunately, last week, I had a mini-stroke. Don't worry; I've nearly completely recovered. My neuro wanted to completely rule out a recurrence of MS as the cause of my symptoms, so he had me go in for an MRI of the cervical spine to go with the brain MRI done for the stroke.

The good news, no active lesions in the head or neck, so no MS. The better news, my neuro had previously described my cervical spine as "looking like a battlefield". Today, he said it "no longer looked like Swiss cheese". I've had a number of MRIs of the brain, and on the last one previous to this one, my neuro had said my brain had improved and now looked like someone who had a mild case of MS. This is only the second MRI of my spine, the first being right before the transplant. So, the transplant and physical therapy are promoting healing in my CNS. I'm not sure the doctors thought that would happen, but I'm glad.

Don't care whether you call it a cure or not; it's just what I needed.

Craig