This Is MS Multiple Sclerosis Community: Knowledge & Support

Asher, my experience tells me that great improvements can be achieved with exercise. It is essential for you to be stubborn and determined to improve your overall condition, and it will be better, you will see. Listen to your body, do not push over the limits, consult experts…but if you want progress – you will have to work very hard. As Giuseppe Garibaldi once said (and Chruchill, among others, repeated), prepare for blood, toil, tears and sweat. But in the end it will pay off, trust me

Thanks Paco, as inspiring as ever! I will build on your experience and follow your advice.

HSCT and other stem cell treatments may be the best hope for repairing damage, but I remain convinced that in most cases CCSVI is the driver, the "direct antecedent" if you will, of the progression of MS.

Venoplasty is not durable, so it's important to remove this factor and keep it removed before taking the much more involved stem cell paths.

Best wishes to Asher and Lizette. Brave pioneers!

Is it possible that the veinous stuff is a side effect of the disease progression, and that ccsvi could slow it down, but that hsct seems to stop the disease its self? just wondering.

_________________
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

Who is John Galt?

HSCT and other stem cell treatments may be the best hope for repairing damage,

Thank you drbart. To set the record straight, HSCT is not a stem cell treatment but a stem cell transplantation of own stem cells to restore an Immune system that was wiped out following chemotherapy. This treatment is designed to arrest disease progression by restoring Immune tolerance. Damage repair is not a direct result of the stem cells but rather self repair made possible by stopping the Immune assault on the nervous system. To cut a long story short, NO CHEMO, NO GLORY. Yours, Asher

One thing that is interesting to note with the HSCT procedure is that it can take awhile for the benefits of re-establishing self tolerance to be realized. But in the long run the disease progression is stopped and possibly some remylination may occur by the action of Oligodendrocyte cells.

This is in stark contrast to people who have had the CCSVI procedure and report experiencing instantaneous benefits.

"This is in stark contrast to people who have had the CCSVI procedure and report experiencing instantaneous benefits."

Indeed, the instananeous beneficial effect of CCSVI is due to the placebo effect, which is why the benefit (if seen at all) is always temporary and not repeatable. If it can't be repeated in a controlled manner, its not a cure. Sorcerey has the same success level as CCSVI. This is opposed to HSCT which is definitively curative that has clearly been established by 'scientifically' reproducible and lasting clinical proof.

BTW. . . . underlying MS disease activity is stopped immediately following HSCT. There is not "delay" in this curative benefit and the body is immediately rendered antingen-naive and self-tolerant, immediately halting further MS disease progression. It is only the "improvement" of the already-damaged nerve structure that takes some time because healing from the body always requires some time just like a cut on the skin does not heal & dissappear immediately, so too does nerve damage take some time to improve/heal/reverse. And so far (at just over a decade of treatment experience) the beneficial curative effects of HSCT has shown to be lasting.

Explained by Dr. Richard Burt. . . . .

http://www.youtube.com/watch?v=msYTOSo4 ... re=channel

As a physicist, you may be interested in another physicist's opinion on CCSVI. You can watch Clive Beggs' discussion of blood flow and CCSVI at the following site...

http://www.youtube.com/user/RadiologySU ... ature=mhee

NHE

Clive Beggs-

Academic Qualifications:
B.Sc (Hons.) 2(ii) in Building (specialising in
building services engineering), Leeds Polytechnic
(1981)
MPhil - Ice thermal storage and refrigeration,
University of Sheffield (1991)
Ph.D - The use of ice thermal storage with real time
electricity pricing , De Montfort University (1995)

It don't think Clive Beggs even has a degree in Fluid Dynamics. Im not sure why anyone would put much faith in anything he has to say.

NHE, I think most people on this section of the forum would appreciate it if you would take your input on the science behind MS back to the CCSVI section. You cannot convince anyone here of its validity.

NHE, I think most people on this section of the forum would appreciate it if you would take your input on the science behind MS back to the CCSVI section. You cannot convince anyone here of its validity

Agree 100%. Please, please let's not confuse facts and fantasy, controlled trials and opinion in this section.

+6 month update:

You may have noticed that I’ve remained silent for a while. I have not reported my progress for 2 months now. This was because there was nothing much to report. While the chemo side effects were incrementally improving, it was impossible to tell the difference between residual MS symptoms from residual chemo symptoms. And so I chose to wait until there’s something worth reporting . And besides, six months post-transplantation is a milestone for most people in recovering from HSCT, and a milestone in reporting MS status.

A short reminder: I was diagnosed with RRMS in 2003, though in hindsight I can trace the likely onset of the disease back to 1997. In 2008, without apparent warning my symptoms worsened and I kept accumulating disability with no remissions. A clear indication that my disease transitioned (as it does for most people with MS) into definitive SPMS. My use of immune-modulator drug therapy (Tysabri) made no difference in the progression of my symptoms and I knew exactly where I was heading: a wheelchair.

Since I did not consider the possibility of spending the rest of my life crippled and dependant to be a viable option, I started to frantically search for a solution to halt the progress of my then confirmed SPMS. And so, in December 2010, I stumbled upon George Goss’s blog. This ‘crazy guy’ had the ‘nerve’ to claim he was ‘cured’ from MS – a disease that is nearly universally considered to be incurable. Luckily I suspended judgment and kept on reading George’s blog. I didn’t (couldn’t) stop until I read the whole blog, including the endless host of scientific papers George sites to support his assertion that HSCT is a cure for MS. I’ll spare you the details, but with George’s help, six months later I was admitted to the world class Hematology department of the Heidelberg University Hospital in Germany to undergo an HSCT procedure under supervision of the amazing Professor Anthony Ho.

George always said that six moths post transplantation is where I should most likely turn the corner and notice whether or not probability has been kind to me: did I or did I not end up on the right side of the treatment efficacy fence (+/- 80%) to stop the progression of my MS disease activity.

And turn the corner I did!! After 6 months I feel entirely confident to make exactly the same big, hairy, audacious statement: My MS has been stopped in its tracks and I AM CURED. The way I experience it, this falls nothing short of a medical wonder.

What I mean by “cured” is a ‘complete halting of disease activity and symptomatic progression.’ Before the HSCT procedure I could tell I was getting worse at any specific point in time by just comparing how I was 3 months earlier. Six months after the procedure, not only have my MS symptoms not progressed, I also clearly notice a host of signs that several of my MS symptoms are improving (something virtually never heard of in SPMS cases like mine).

Let’s get a little more specific here and take a virtual journey from top to bottom:

- Starting with my brain: I am now completely free from the so called ‘cog fog’. I’m completely lucid, think on my feet, short-term memory is as good as it ever was, I no longer search for words and I am no longer moody. Just like I’ve been transported in time to an earlier year of my life.

Additionally, vertigo and heat intolerance that I previously experienced have entirely vanished.

- Eyes: The slight optic neuritis ever present in my right eye is now gone and fully resolved.

- Mouth and throat: My speech shifted up a few gears; I am able to speak noticeably faster and I am a lot more fluent & flowing with my words. Swallowing is back to normal and I no longer suddenly ‘choke on my coke’.

- Right arm and hand: Getting stronger. I can now hold a knife or spoon without feeling it is a 100 pound weight. I have also regained lost writing ability. Not fast hand writing, but it is reasonably legible. I am lifting weights, and I am making daily, small, but never the less evident and continuing progress.

- Bladder: Urgency is greatly reduced and my urinary tract works like you may expect from a 49 year old. Wow, what a relief!

- Right leg: spasms are gone, red and at times black toes turned nice and pink. My muscles are getting stronger and walking is starting (I stress ‘starting’) to improve. My home trainer is registering daily progress, and I can climb the stairs at home with markedly greater ease.

- Overall: Stamina and vitality levels are picking up quickly and people around me are impressed by the progress I am making. I sleep like a baby, wake up fresh and remain so throughout the day. I can read a book without falling asleep. Finally, my body temperature is normal again and my extremities are warm.

Now back to the ‘contentious cure’ word. If what you mean by ‘cure’ is to turn back the clock and instantaneously erase all traces of neural damage from MS, then we are not on the same page. I went in only hoping for stopping disease progression in its tracks. I viewed the anecdotal and clinical evidence and it appears to me that it is realistic to hope for some degree of damage recovery in the 2 years following HSCT as a potential bonus. Nerves are a tissue that regenerate very slowly. Worse, beyond a certain threshold of damage, they are beyond repair and all one can hope for is for some kind of neural bypass to emerge over time. What this boils down to is that the damage resulting from years of a wayward immune system pounding of the nervous system cannot be reversed overnight. The great news is that once the immune tolerance has been restored (as I expect has happened in my case due to HSCT), the body then has a chance to start inspecting and repairing the damage and restoring whatever possibly can be restored.

Thank you George, I am grateful for the air I breathe and the ground I walk on.

Way to go asher. I hope you and george are right, and the literature points to you guys being right. Please keep us posted on yhour progression. I am planning on a January meeting with dr Burt based on what I have learned from you guys and the literature gleened through this site. How long were you out of work? That is a big issue for me. I have about three months of vacation saved up and need to know how much time to ask a friend to donate. My heart goes out to stella and her husbandan but it is good to know her experience is an exception.

_________________
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

Who is John Galt?

Great to hear you are doing so well Asher.

When I first became sick I started to do a lot of research on MS and came to the conclusion it was caused by the loss of self tolerance. Once your immune system loses the ability to distinguish self from non-self it does not seem that there is a way to reverse this.

But then I started reading a lot of Georges posts and his blog and bingo, it all falls into place.

Unfortunately people don't seem to be able to grasp what HSCT does, otherwise there would be an outcry for more money and interest in this procedure.

So it is good to know that if my disease does start to progress in the future there already is an established method of stopping it. Hopefully by then insurance companies will come to realize that this is the way to stop MS progression.

Asher is very kind with his praise for my helping to steer him in the direction of HSCT to win the battle over his MS. But don't give me too much credit. Asher is the one that made the educated decision to receive HSCT to beat his MS and that credit goes entirely to him (and his wonderful wife & son). On top of this, although I don't get/want money or fame from my HSCT blog, I have received something valuable in return. I get to see another person now cured of MS disease activity & progression, and I now have the best friend (Asher) one could hope for in life. That is worth way more than money. We are brothers! Now let's see if Asher can report 'substantial' improvement of his pre-existing MS symptoms at 12-18 months, just as I have. I'm praying and betting he will. Dr. Burt thinks it likely. . .

http://www.youtube.com/watch?v=msYTOSo4 ... re=channel

Asher's post-HSCT status page. . .

http://themscure.blogspot.com/2011/06/p ... cohen.html

My own 2-year post-transplantation "birthday" is coming up at the end of this month (Dec 28) and I will be making a 2-year post on my status. Sneek peek: Although I can't run a mile, I can walk a mile-and-a-half without stopping to rest (I couldn't do that prior to HSCT as I was at EDSS 3.5 with a maximum walking range of only a few hundred meters and today I'm at EDSS 2.0). Today I'm still MS progression-free and I have been able to keep all of the tremendous improvement (EDSS gains) I have already experienced. I no longer see a neurologist (no longer necessary) and I love that I no longer take any medication of any kind for MS. No more injections (Avonex that I had taken for 15 years). Yipee! My future belongs to me again, not a wheelchair.

As a side note. I am also aware of about 6 people that have already had HSCT for their MS at various facilities around the world after reading my blog, and there are approximately another dozen lined up to get treatment in the near future. I'm happy to communicate with these people and share what info I have so that people can make a better-informed decision.

Shucks. . . . if recovery timeframe is an important factor it appears that 'most' (but not garaunteed for all) people will have a more rapid recovery timeframe with the non-myeloablative HSCT protocol. If it were me and this were part of the decision, probably I would go for the non-myeloablative HSCT. Luckily this wasn't a factor for my own treatment and is why I went for the myeloablative protocol. I was 90% recovered from the latent chemo effects (mainly tiredeness) at 7 months post-transplantation. However, I was able to go back to my desk job at about 4 months.

Treatment options that I am aware of. . .

http://themscure.blogspot.com/2011/06/g ... -have.html

CV. . . all good points, as usual. My own opinion regarding why the broader MS community doesn't jump onto the firm science behind the outstanding curative effects of HSCT is that most likely it's the cost of the procedure. Understandably many (most?) people cannot afford to do the procedure and its probably human nature to deny that HSCT works if you can't get it anyway. But once insurance begins to cover HSCT for MS (an absolute eventuality), then I bet it will finally become much more popular than CCSVI. Just my theory about human nature.

Asher, I am really glad you are doing well. With regards to the recovery, let us hope that in the upcoming years you will experience something called "neuroplasticity" (bypass, in your own words), the ability of the brain and nervous system in all species to change structurally and functionally as a result of input from the environment (wikipedia). It is up to you to constantly create that input with exercise...once again, good luck!