This Is MS Multiple Sclerosis Community: Knowledge & Support

So happy neurologist-led CIHR & MS Society are in control

_________________
Albany 2010. Brooklyn 2011
Hurry up and wait.

What is your complaint exactly? They are studying CCSVI. Personally I wish they would give stem cell treatments for MS this kind of attention.

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

My complaint is that this process will take years and the neuros will ultimately have deciding power on what and how the trials are done. This needs to be looked at in partnership with IR's and Vascular Surgeons.

In Canada I believe that Dr.Freedman is or has done stem cell trials. If my memory serves me correctly, and I might be way off base on this, one of his stem cell trials had to be stopped because the participants got much worse. Stem cell treatment doesn't need attention because the neuro's are already studying this potential. The majority of the neuro's looking at CCSVI are looking at it to disprove the theory. They are not trying to determine if it works or how return blood flow affects our bodies.

CCSVI trials need to start now and not from phase I/II. This is a stall tactic.

I just wish there was as much interest and studies in numerous provinces like there is for CCSVI. I am particIpating in a research study for CCSVI here in Calgary. Granted, these are health research studies and not treatment.

Dr. Freedmans stem cell study patients are at about the ten year mark and all are progression free with some demonstrating small improvements. I believe 2 of the patients died from chemotherapy related complications and this was always known to be a risk. However, these patients were progressing rapidly as I have, and went in with eyes wide open.

By all means, study CCSVI and offer treatment. I would then expect that those of us who want stem cell treatment should also be able to have it, and it has been more extensively studied.

So imagine the expense-I really don't think neurologists care if CCSVI treatment is offered or if people take their DMDs or not. Certainly in a publicly funded system like Canada our neuros are hardly at the trough of Big Pharma. It's much likelier that politicians are unwilling to fund the cost of this extensive treatment.

Neurologists will not be out of work if MS were miraculously cured tomorrow. There are enough devastating neurological conditions to go around. I don't think they have a sinister desire to thwart CCSVI research.

I am frustrated by the slow pace of ALL research, drugs and all. Does anyone know who the governing body is that decides how many years each Phase of a study should take?

Maybe what I m trying to say is that the focus on CCSVI seems a bit narrow and I would like more pressure brought to bear to try a variety of experimental treatments for those of us with this incurable disease (I have never even had the option of taking a DMD as none are approved for progressive in Canada). I don't think CCSVI is where the money is, so tospeak, for my type of MS.

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

" have never even had the option of taking a DMD as none are approved for progressive in Canada"

i have always been progressive and am now a quadriplegic and have tried beta and copax. in fact i took copax as a quad. and my neuro whom i don't see now is on the CIHR.

@ KateCW. I do not believe you are correct in saying Dr Freedman's patients are progression free. (could be wrong). One patient improved dramatically She was in the relapsing remitting stage. Who knows, maybe she would of gotten better without the stem cells. And you are correct in saying 2 died. If MS is NOT an auto immune disease then it would not be necessary to administer chemo before implanting stem cells. I tried stem cells in Costa Rica. (without chemo) Did nothing for me and for all the others that were there when I was. All of us have deteriorated. The stem cells (8, from umbilical chords) were given into the spinal fluid. And stem cells harvested from my fat (2) were given intravenously. The doctors there told me that they never know where the cells go to. So I guess we will have to know exactly where the problem lies and place the cells at the appropriate location?

http://www.wireservice.ca/index.php?mod ... y&sid=7035


CCSVI Ontario has a strong opinion....

Does anyone know what phase of research this will be? Phase I, Phase II, Phase III?

I agree that stem cells should be researched in MS. I think a promising treatment avenue is combination CCSVI venoplasty and stem cells delivered to the carotid artery, which may help them reach their target in the brain. There was a researcher who presented on this at the NY symposium.

One of my concerns with neurologist-led research is that we've seen a fair amount of articles published in Neurology with negative findings, as well as negative editorials, while the articles in the vascular journals have generally positive findings. Dr. Michael Shannon of the Scientific Advisory Board stated his concern that the degree of controversy over CCSVI may have extended beyond the boundaries of healthy scientific debate. When I hear that, I think of articles with titles such as "The perfect crime? CCSVI not leaving a trace in MS." ECTRIMS was negative this year too. There are articles such as by Dr. Doepp that find 70% of MS patients have CCSVI, but that present that negatively as a lack of causation due to specificity/sensitivity. I don't care if CCSVI is cause or risk factor or even result, however unlikely that last one is. I care whether or not CCSVI venoplasty can help people with MS.

this is great news. Of course patient safety is a first priority. We know and accept that.

We also know , as do the people in Ottawa proposing the study of MS & CCSVI .... that there is well documented incidents of CCSVI involved medical dilemas. To say the least.

That said , and in all fairness ..... people have died while in the process .... of almost every imaginable medical procedure ..... including dental work. Nobody really knows why.

The concept of CCSVI is new. It must take it's slings and arrows in order to gain acceptance by the - thankfully - cautious medical community. There is no way around this.

And MrSuccess welcomes excessive caution when venturing onto untested ground.

Now the good news.

There is a large body of CCSVI work available for immediate study. There are numerous well respected medical professionals already well versed and experienced in treating CCSVI.

The people organizing the CCSVI trial need only pick up the phone and ask for their help.

MrSuccess is of the opinion that such important groundwork performed already - by reputable CCSVI medical professionals - will allow the announced CCSVI trial ..... to gain traction very quickly ...... and proceed to the most important phase .... TREATMENT.

Well done .... CCSVI pioneers ..... well done



MrSuccess

My only information on the immunoablative stem cell transplants done by Dr. Freedman is from the write-up on the MS Society website which states that all the patients are progression free and all are off DMDs. As for RRMS patients getting better without the stem cells, the same could be said of CCSVI.

My clinic won't prescribe DMDs for PPMS because they have never been shown to work, which was what I meant when I said it had never really been an option for me.

I think the stem cell clinic in Costa Rica was recently closed down?? I am not sure, but my understanding is that their practices were not considered sound o helpful to their clients.Again, I may b wrong about the clinic.

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

The clinic in Costa Rica was closed because of the government disallowed this practice, just as it stem cell and CCSVI treatment are not allowed here in Canada. They had a facility in Panama, so they are solely operating from there.
I would disagree about improvements just happening with CCSVI. I am SPMS and when I had my first CCSVI procedure I had improvements hours later. My swollen/purple foot was completely normal 5 hours later. My legs were not any stronger but the rest of my body was. Now, to say this was a placebo effect... how come I did not experience a placebo effect with stem cells? And I truly believed stem cells would help me. And when I restenosed all my symptoms returned. Everyone that restenose have the return of their symptoms.
Jennifer Molson was the person that improved the most with stem cells in Dr Freedman study. But these improvements were after 2 years. She had little change in those first 2 years. Maybe it took that long for the cells to work, I do not know.
Stem cells should be studied for MS. My neuro at the Montreal Neurological Institute is involved in this.
I was witness to some patients getting improvements with stem cells but they were not MS patients. One was a 9 year old autistic boy who also had an immune deficiency disorder. The first stem cells he received one year prior, cured him of the immune problem. His doctor in the US was amazed. The family returned and started treatments for the autism and the boy showed a remarkable improvements. Obviously this was not a placebo effect as the child was severely autistic and had no idea what was being done to him.

http://www.marketwatch.com/story/msrcny ... 2011-11-21

An MS/stem cell study announced this week in NY, that will treat 20 progressive patients.

I was so excited to read about that earlier this week. I have been traveling to this clinic in NYC for intrathecal methotrexate treatments. The clinic seems committed to studying and treating more progressive forms of MS, or which I am grateful.

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

The Federal Government and the MS Society are acting irresponsibly" said Warren Stefanuk, President of the Chronic Cerebrospinal Venous Insufficiency Society of Alberta (CCSVI Alberta). To allow people to suffer and die while a potential life saving treatment is available is unethical, bordering on criminal. This has gone on too long! How many more must die?" There are now thousands of with Canadians with MS shouting at the government "The MS Society Does Not Speak for ME!" The Federal Government isn't listening!


http://www.wireservice.ca/index.php?mod ... y&sid=7036

You said it Eric! IF, I had one wish, (other than not having this miserable disease/condition) it would be, that every doctor and politician live in my body for one month! And I am not the worse case, but getting there all too quickly!