My CtrlAltDel - Status

[CVfactor]

George, yes the evidence overwhelmingly points to MS as being autoimmune in nature which is why the HSCT procedure has such a great success rate. If only there was the same interest in HSCT as there is in CCSVI we would be further along in making this available to more people.

[Asher]

If only there was the same interest in HSCT as there is in CCSVI we would be further along in making this available to more people.

This is not happening for 2 reasons I guess:

- Human nature is such that we seek easy solutions for complex problems - quick fixes. CCSVI is seductive in its simplicity and offers (false)hope that seems attainable (availability and price).

- HSCT is (as yet) an expensive procedure, uncomfortable and not widely available. It takes a determined and tenacious mind to make HSCT happen. Hopefully once the phase III trails are concluded and HSCT will become a standard therapy for MS this will change. Until then, I expect HSCT will remain a 'hobby' for the early adopters.

[georgegoss]

George, yes the evidence overwhelmingly points to MS as being autoimmune in nature which is why the HSCT procedure has such a great success rate. If only there was the same interest in HSCT as there is in CCSVI we would be further along in making this available to more people.

Both Asher and yourself have said it very eloquently. I'm in 100% agreement.

The good news is that it is inevitable that HSCT will eventually (perhaps in approximately ten years timeframe) become an FDA approved treatment. At that time insurance companies will begin paying for (the quite expensive) HSCT procedures for MS and I think people at that time will be asking why they didn't do it sooner. C'est la vie!

[CVfactor]

Compared to the cost of MS drugs I think insurance companies may find it a less expensive option.

[georgegoss]

Compared to the cost of MS drugs I think insurance companies may find it a less expensive option.

Very astute statement!

Following HSCT people stop taking (expensive) immunomodulator drugs since the progression of the disease is stopped. So based on just a few years of not having to take expensive CRAB drugs, the procedure pays for itself over some finite time interval. For myself, no longer taking Avonex I calculated a six year return-on-investment (ROI). Just from a financial perspective I should break even around 2015.

So you're absolutely right that in the long run the insurance companies will actually save money (i.e. be more profitable) endorsing HSCT to cure MS. But on the other hand I would think the drug companies are likely to be far less enthusiastic about HSCT because their revenues from MS-related drugs are likely to be substantially reduced once HSCT becomes an approved treatment and more MSers seek HSCT to stop their MS disease progression.

[burg]

First time I did CCSVI, I felt numerous changes...when they disappeared, I tried again, and again...Now time to move on. If this indeed works then I need to take a serious look at it.

[georgegoss]

First time I did CCSVI, I felt numerous changes...when they disappeared, I tried again, and again...Now time to move on. If this indeed works then I need to take a serious look at it.

Regardless of your decision on how to proceed forward, you are a good inspiration for others and have my sincere respect that you are taking control of your disease, instead of the other way around. More power to you Burg!

[Lyon]

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[CVfactor]

On the subject of HSCT, I found a very interesting article about this procedure for patients with leukemia:

http://www.hematology.org/News/2011/6403.aspx

I think that for these patients the cells are from donors, but it looks like a key outcome is that the regulatory T cells have a benefit if introduced before conventional T cells.

I think this is important for MS because it has been shown that people with MS have defective regulatory Tcells and they may be more deficient (or less numerous) in the primary progressive form.

So, my thought is that could possibly explain why HSCT is not as effective in the primary progressive variant compared to RRMS.

[georgegoss]

If only there was the same interest in HSCT as there is in CCSVI we would be further along in making this available to more people.

One thing most people would probably agree about is that it will be VERY interesting to see firsthand how this whole story of ccsvi is viewed in retrospect.

Yes, agreed. Eventually time will bear-out the final judgement.

[georgegoss]

On the subject of HSCT, I found a very interesting article about this procedure for patients with leukemia:

http://www.hematology.org/News/2011/6403.aspx

I think that for these patients the cells are from donors, but it looks like a key outcome is that the regulatory T cells have a benefit if introduced before conventional T cells.

I think this is important for MS because it has been shown that people with MS have defective regulatory Tcells and they may be more deficient (or less numerous) in the primary progressive form.

So, my thought is that could possibly explain why HSCT is not as effective in the primary progressive variant compared to RRMS.

This is an interesting article. Thanks for sharing it. Your thinking in regards to the functional differentiation of T-cells certainly sounds plausible. Perhaps over time there will be more research devoted to this specific topic. Especially because it all relates to the question of why RRMS most often changes to SPMS, and why does PPMS happen in a subset of the population? And I like you're pointing down this path in asking why does HSCT have a poorer success rate in progressive cases as opposed to the (nearly 100%) good success rate in RRMS. This is so far a complete mystery and personally I would love to know more beyond the "what" of the current statistics, mainly the "why?"

Sorry to ramble here. . . this article made me think about the underlying cause of MS, which is still a mystery. Most researchers beleive there is both a genetic and an environmental component to the initiation of MS in which both factors must be present for MS to manifest. In an autologous HSCT procedure it clearly would cancel (at least for some period of time) the environmental component. Kind of like "setting the clock back in time" before the environmental exposure. While on the other hand an allogeneic HSCT procedure would cancel both factors because the adopted & grafted donor stem cells from an HLA match would have a uniquely different genome. So in effect (although not proven) in theory an allogeneic HSCT should have the best chance of complete lifetime MS erradication. But of course doing allogeneic transplantation for MS is likely not a good option because the mortality rate is so very high (death rate between 10-35%). For myself I would have passed on those poor odds. I'm glad that an autologous HSCT procedure at a good facility is less than 1% mortality. That was a risk I was willing to take, and did. I'm still alive & healthy following the procedure.

Again, thanks for sharing the article and thoughts. Made me think.

[Asher]

Two-month report

Just to remind you, I was SPMS with an EDSS of 4 – 4,5 before the HSCT procedure. My disability was fully limited to the right side of my body: Leg, arm and mild optic neuritis. On top, the usual MS stuff like fatigue, MS hug, urgency, vertigo, occasional depression and moodiness.

I have, and always had, an A type behavior personality, meaning I expect things to have happened yesterday. This probably played a role in my HSCT happening 5 months after I first learnt of the great results obtained in clinical trials. The downside is that I can get impatient and forget that there are things in life (more than I care to admit) that are beyond my control. The recovery from HSCT is one of them.

So here’s where I stand 2 months post chemo and transplantation, and remember, I promised nothing but the facts: Things are getting better, inch-by-inch, step-by-step, though hardly as fast as I would like them to.

My blood counts have fully recovered, apart for my white blood cells. These (B and T cells) will fully recover after 12 months. This is when I will be vaccinated to enable my now naïve and deficient immune system to effectively protect me from Chickenpox, Polio and the likes.

With the recovery of my blood counts, I experience my stamina and vitality are getting close to what I would consider normal. I no longer feel the urge to take a nap during daytime. I do feel a little tired after a sustained effort like exercise, but the MS hug and fatigue are all but gone. Bottom line, I experience like I have been pulled out of a long period of hibernation.

Vertigo is all but gone and I am stable. Before HSCT all you needed to do to have me fall over was to sneeze. Now you can push me and I will remain stable on my feet.

Urgency is gone too. No waking up at night, and I no longer need to fear I will not make it on time to avoid being embarrassed.

Optic Neuritis also seems to have resolved already in this early stage. In the past 2 months I only had one very subtle reminder of what was a permanent nuisance before HSCT.

Brain lesions; I have scheduled an MRI sometime in September and agreed with my Neuro (whose spouse happens to be a hematologist) that we will run an MRI twice a year to monitor whether the disease progression actually topped.

Finally, you probably want to hear whether my walking has improved. Well, unfortunately I’ll have to disappoint you here. This is where my patients’ will be put to the test. Whether my motor functions will improve, and to what extent, is unlikely to become apparent before sometime in 2012. Damaged Neurons take time to recover, and in some cases, some may even be beyond repair. For the time being I am struggling to recover the muscle mass I have lost due to 5 weeks of practically no exercise.

Finally, the worst part of MS is that we people are designed to hope and believe that tomorrow will be better than today. SPMS meant that tomorrow would inevitably be worse than today. After HSCT I have literally come back to life. I dare to dream of a future (despite the looming double dip recession).

[CVfactor]

Hi Asher,

Thanks for sharing your progress with us and I truly believe that this procedure is the most promising method currently available to stop this disease in its tracks. But Im interested in what your optic neuritis was like? For myself I would have severe pain behind my left eye when I would have an episode which would last several days. What were your symptoms?

[Asher]

But Im inteurested in what your optic neuritis was like? For myself I would have severe pain behind my left eye when I would have an episode which would last several days. What were your symptoms?

CVfactor, so sorry to hear about the severity of your optic neuritice symptoms. I must admit mine was never as bad. I experienced no pain. At worst I experience internal eye ball pressure and slight blurring of my sight. This is now mostly resolved.

Wish you the best of health. Always available should you want to know more. Asher

[georgegoss]

I find it interesting when I hear someone say that MS "is looking less and less like an autoimmune disease" when in actuality the science indicates completely the opposite. . . .

Wayne State University researchers publish results settling multiple sclerosis debate

http://media.wayne.edu/2011/02/22/wayne ... s-settling

"This work is significant because for the first time we are able to definitively establish a cause-and-effect relationship linking the marked T cells to the development of relapses and show unambiguously that it was the same T cells that mediated relapsing cycles. ". . . . "Targeting such disease-causing T cells in MS is definitely a valid therapeutic approach that should be pursued," Tse added. [which is exactly what HSCT does]

MS genetic discovery casts doubt on vein [CCSVI] theory

http://www.ctv.ca/CTVNews/Health/201108 ... em-110811/

The study authors say the findings reaffirm the long-held assertion that MS is primarily an autoimmune disorder and that changes in the immune system set off the disease.

"Our research settles a longstanding debate on what happens first in the complex sequence of events that leads to disability in multiple sclerosis," Dr. Alastair Compston, a University of Cambridge neurology professor who was one of the leaders of the study, said in a statement.

"It is now clear that multiple sclerosis is primarily an immunological disease. This has important implications for future treatment strategies." [such as HSCT]