[ExI] Gina "Nanogirl" update: yes it is Multiple Sclerosis

Gina Miller nanogirl at halcyon.com
Fri May 9 03:03:22 UTC 2008

Yes I have seen this mentioned in respect to MS although not this particular article and it is a very interesting indeed, thank you. I would like to see more years on the results (mostly because sometimes MS patients can appear to be episode free for many years and then something will happen) and I will research the information you provided further. I do have personal experience with stem cell transplants, as you may recall my husband who was diagnosed with multiple myeloma (cancer) in 2004 had two stem cell transplants in 2005 and let me just tell you, it is extremely intense and dangerous (some people don't make it). When you have the pre chemo before hand they are basically killing you, by killing all of your cells and it is only the transplant of the stem cells that saves you, but boy is it rough getting there. So even if this is proven true at some date I would still hope for our improving on these treatments so that they are not as severe in nature.... come on nano medicine! 

I have started noticing stem cell transplants being mentioned as treatments for other diseases as well, I think I saw someone on TV say they had one to treat Hepatitis and they went into a 100 percent remission, I had never heard of that before - but it is sort of like a "reset" if you will, they take yours out and give you new ones - so I can see it in hindsight.

I'm still in an early diagnosis (and I am still hoping that I am in the lucky 20% -small I know- that doesn't have the most dire continuation of the illness) so even if this research does move forward it probably would have to wait to be an option until I had much more debilitating symptoms, and even at that - since it would be new in relationship to this disease it would be initially considered "experimental" by the insurance company. I know this from my experience with Jim, while the allogeneic stem cell transplants (in which stem cells are provided by a donor) were available and used regularly for decades they would not approve it for him, they considered it "experimental" (not the medical community just the insurance company) so he had two auto stem cell transplants (self donated) instead, we had no choice in the matter even though we would have preferred the allogeneic for his second transplant with the data available at the time. However you can usually see a clear difference in the amount of money, just from memory here: for the autologous (which they approved) it was between 80,000 - 125,000 verses the denied allogeneic which was about 250,000 (depending upon how long they have to search for a donor). It's clearly a substantial difference. But all this research is terrific because we learn more - and I really hope they come up with some solutions for MS, MM and for all other illnesses out there. 
In the meantime they did send off my request to the insurance company for the weekly Avonex shots, haven't heard anything back yet. Please do not hesitate to forward me anything else you may find in the future, I want to stay informed and I very much appreciate your helping me to do so by sending this to me. 

Gina "Nanogirl" Miller
Nanotechnology Industries
Personal: http://www.nanogirl.com
This health stuff blog: http://ginamiller.blogspot.com/
Animation Blog: http://maxanimation.blogspot.com/
Craft blog: http://nanogirlblog.blogspot.com/
Foresight Senior Associate http://www.foresight.org
Nanotechnology Advisor Extropy Institute  http://www.extropy.org
Email: nanogirl at halcyon.com
"Nanotechnology: Solutions for the future."
  ----- Original Message ----- 
  From: Damien Broderick 
  To: ExI chat list 
  Sent: Tuesday, May 06, 2008 1:03 PM
  Subject: Re: [ExI] Gina "Nanogirl" update: yes it is Multiple Sclerosis

  Damn. But... seen this?

  "Bone Marrow Treatments Restore
  Nerves, Expert Says"

  Maggie Fox, Health and Science Editor

  May 6, 2008; Bethesda, MD (Reuters) -- "An experiment that went wrong 
  may provide a new way to treat Multiple Sclerosis," a Canadian 
  researcher said on Tuesday. Patients who got bone marrow stem-cell 
  transplants -- similar to those given to Leukemia patients -- have 
  enjoyed a mysterious remission of their disease. And Dr. Mark 
  Freedman of the University of Ottawa is not sure why. "Not a single 
  patient, and it's almost seven years, has ever had a relapse," Freedman said.

           Multiple Sclerosis (MS) affects an estimated 1 million 
  people globally. There is no cure. It can cause mild illness in some 
  people while causing permanent disability in others. Symptoms may 
  include numbness or weakness in one or more limbs, partial or 
  complete loss of vision, and an unsteady gait. Freedman, who 
  specializes in treating MS, wanted to study how the disease unfolds. 
  He set up an experiment in which doctors destroyed the bone marrow 
  and thus the immune systems of MS patients.

           Then stem cells known as hematopoeitic stem cells, 
  blood-forming cells taken from the bone marrow, were transplanted 
  back into the patients. "We weren't looking for improvement," 
  Freedman told a stem cell seminar at the U.S. National Institutes of 
  Health.  "The actual study was to reboot the immune system." Once MS 
  is diagnosed, Freedman said, "you've already missed the boat. We 
  figured we would reboot the immune system and watch the disease 
  evolve. It failed."

  Stem-Cell Repair

           They had thought that destroying the bone marrow would 
  improve symptoms within a year. After all, MS is believed to be an 
  autoimmune disease, in which immune system cells mistakenly attack 
  the fatty myelin sheath that protects nerve strands. Patients lose 
  the ability to move as the thin strands that connect one nerve cell 
  to another wither.  Instead, improvements began two years after 
  treatment. Freedman reported to the seminar about 17 of the patients 
  he has given the transplants to. "We have yet to get the disease to 
  restart," he said. Patients are not developing some of the 
  characteristic brain lesions seen in MS. "But we are seeing this repair."

           MS patients often have hard-to-predict changes in their 
  symptoms and disease course, so Freedman says his team must study the 
  patients longer before they can say precisely what is going on. "We 
  are trying to find out what is happening and what could possibly be 
  the source of repair," Freedman said. But he has found some hints 
  that may help doctors who treat MS by using drugs to suppress the 
  immune system. "Those with a lot of inflammation going on were the 
  most likely to benefit (from the treatment)," he said.

           "We need some degree of inflammation." While inflammation 
  may be the process that destroys myelin, it could be that the body 
  needs some inflammation to make repairs, Freedman said. Immune cells 
  secrete compounds known as cytokines. While these are linked with 
  inflammation, they may also direct cells, perhaps even the stem 
  cells, to regenerate. The treatment itself is dangerous -- one 
  patient died when the chemicals used to destroy his bone marrow also 
  badly damaged his liver.

  Reporting by Maggie Fox; Editing by Julie Steenhuysen and Eric Walsh

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