This Is MS Multiple Sclerosis Community: Knowledge & Support

Here is a link to an article in today's Ottawa Citizen newspaper. It refers to a trail that has been ongoing for the past 13 years here in Ottawa. They have been experimenting with bone marrow transplants and have cured all 36 people that they have treated. There has been one death.

http://www.ottawacitizen.com/health/Ottawa+doctors+behind+breakthrough+report/8180666/story.html

Bruce.

Looks like the CCSVI anti-Christ has developed a pretty good batting average!

PN

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Albany 2010. Brooklyn 2011
Hurry up and wait.

This is wonderful news; 100% success. When can we expect to see widespread use or at least a much bigger trial?

My disdain for neurologists (anti-Christs) is that they peddle near useless drugs but have nothing really helpful to offer... at least until now. If this works I'm all for it.

If it works, then great.

Lets just see how hard they have to struggle to get anyone to take that seriously and get any sort of large scale trial or acceptance of it going on.

Like any other treatment that has no long term drug use, there's little financial interest of the private sector, or at least there's little compulsion for a drugs firm to throw millions at a study/treatment that has no back end for them - not conspiracy, just basic capitalism.

Looks like something close to a "cure" to me. Shoulda made neuros think CCSVI was their idea. We'll probably see stem cell therapy before CCSVI in Canada. Just sayin'

Peace, PN

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Albany 2010. Brooklyn 2011
Hurry up and wait.

Good God, I hope we see stem cell treatment in Canada before CCSVI - it's been studied longer, more established as a treatment and helpful For other diseases. I'm frustrated at the slow pace of development for MS specific stem cell therapies...how many more 10 year studies on the su ject do we need....?

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Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy

A cure? I doubt it. Years ago there was a TV report on Freedman and his stem cell therapy. Some of his patients were interviewed. Only 1, Jennifer Molson, improved. I tried them in Oct 2009. Using my own stem cells taken from my body fat plus umbilical cord stem cells. It did nothing for me and my condition continued to decline. And all the other patients I met while there for 4 weeks have also become worse. If you believe that CCSVI exists then MS is not an autoimmune disease and there is no need for chemotherapy. We do not have any info on the patients. Were they RRMS, SPMS, or PPMS? If they were RRMS, who knows if they were going through a stable period? I did very well for 17 years. No one would have known I had MS.Today my condition is the opposite. I am no longer autonomous, cannot walk one step. So if I had been in this trial during my stable period, what would the doctors have said about me. I had angio twice, then my veins blocked from scarring, next, had 3 vein bypass surgeries, which the transplanted veins stenosed, next, I was in Dr Scott Rosa"s study with the upright MRI and AO adjustments for CSF flow but failed to keep the adjustment, And with 2 angios, 3 vein bypasses and 5 AO adjustments I had incredible improvements, unfortunately short lived. And now I am doing Rosegirl's little trick with the tissues and it is helping. In my case I believe my problem is one of restricted flow. Both blood and CSF. Which came first...I do not know. What is the beginning point of this wretched disease, the cause, I wish I knew. And if stem cells are the cure...fantastic! We all want/need a cure.

There are stem cell treatments and there are stem cell treatments. what you had is not at all like the stem cell transplant in Freedman's study or like the mesenchymal stem cell transplants being trialed for MS patients in a few locations ( Cleveland I think?). Unfortunately there are clinics that offer a variety of stem cll based treatments for various illnesses without any real evidence that they are helpful. The ones that ARE helpful ( like in FreedmNs study) are more in loved and time consuming.

I'm glad you did find something that helped you, even if short lived.

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Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy

A cure would mean to reverse the damage that the MS underlying condition has done, including the brain scleroses. As the article doesn't says so, its claim about a cure is a lie.

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You can get a worldwide list of available sites for CCSVI at http://www.ccsviclinic.info

We all have different definitions for what "cure" would mean to us. Cancer can be cured without recovering what was lost ( Breast, kidney, etc).

No one in this article used the word " cure". Must be the reporters.

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Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy

Here are a few sites on the different type of stem cells and what diseases they treat.
Seeing as no one knows the actual cause of MS, how does anyone know how to treat it? I researched extensively before trying stem cells. The cost for that treatment was $30,000US. Kate please do not assume I went into it blindly. I was really hoping it would help me. I do believe using stem cells for many other diseases will be a big plus. I was diagnosed with Hodgkin's Lymphoma in 1992. And they use stem cells to treat that if chemo and radiation do not work. My cousin's daughter also had Hodgkin's. Had 3 failed stem cell treatments. She died at the age of 24. I also know another with the same cancer and has had stem cells 4 times. But the "beast" cancer has always returned.
http://stemcells.nih.gov/info/pages/health.aspx
http://learn.genetics.utah.edu/content/ ... s/sctoday/

I noticed !

This is the same (or very similar to) procedure that Dr. Burt is doing at Northwestern University.
And there is a lot of discussion under the "stem cell" section.

In the procedure, Burt and colleagues treated patients with chemotherapy to destroy their immune system. They then injected the patients with their own immune stem cells, obtained from the patients' blood before the chemotherapy, to create a new immune system. The procedure is called autologous non-myeloablative haematopoietic stem-cell transplantion.

"The Division of Immunotherapy and Autoimmune Diseases (DIAD) is the only center in the world devoted to a unique area of treatment and research utilizing stem cell transplantation in clinical trials for autoimmune diseases and vascular diseases. DIAD pioneered and performed America’s first hematopoietic stem cell transplants to treat: Multiple Sclerosis (MS), Diabetes, Lupus, Crohn’s, Rheumatoid Arthritis, Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Phemphigus, Dermatomyositis, Devic’s, Myasthenia Gravis, Polymositis and Scleroderma"

Note : Dr F admits that this procedure is extremely risky. And of greater concern ...is his open admission .....that his goal was to observe what happens when they eliminate the immune system and then reboot it . I do not see any mention of trying to solve the MS riddle. Big difference.


MrSuccess

Ablation is destruction of the immune system to allow it to regrow, hopefully without any of it's wrong targeting. This wrong targeting comes about because of CCSVI, among other
reasons, probably.

Ablation is also used in cancer therapy, and in bone marrow transplants, to prevent rejection. It can include radiation, chemo, and monoclonal antibodies.

My brother had the bone marrow transplant, and is mostly doing well. Once you have a new immune system you are vulnerable to childhood diseases like mumps again. He had a bad case of shingles and may lose some facial nerves.

I don't believe in a simple cause with a simple risk-free "cure", and I don't think Dr. Freedman does either. I think maybe "MS" can be caused by CCSVI, and initially has complete or almost-complete remissions due to new collateral veins, which are harder to come by in some people.

Time will bring worsening vein problems. The immune system is compromised by bad stuff building up, causing BBB permeability to immune system components, too much ET1, yada yada.

Only people who don't believe they have already solved it, or that it has a solution at all, are interested in the "MS' puzzle.

I'd be happy with an approximation. I don't qualify for an 'immune reset' as I am over 50, unless that has changed. I think ablation is still more risky than a PTA on my veins, though I
am sure it is less aggressive now.

Don't believe claims of an exclusive treatment.

Where does CSF drainage come into it? It uses the jugulars.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience