This Is MS Multiple Sclerosis Community: Knowledge & Support

it looks like dr freedman has just found a cure. he said that taking an ultrasound examination is not suggested for MSers. A few weeks later he announces that rebooting the immune system (which means chemotherapy) is just fine... One trial subject died as a result of liver toxicity, leading to changes in the study’s protocol.

http://www.vancouversun.com/health/Stem ... z0mxwJqs1x

where are the hidden cameras? is it just me, who doesnt understand something?

are you a scientist, MR freedman?

It seems that everyone is protecting their own investments and interests.

Dr Freedman is obviously heavily involved in regeneration and the autoimmune theory.

Saying that I am very happy that they are making progress, I would be happy to have CCSVI and stem cell reboot working together to erase this illness 100%

Revimmune also seems to have some really good outcomes so I do believe there is an AND situation with MS rather than an either/or.

hello,

I have done the chemotherapy and my own stem cell's injection a bit more than 1 year ago and I can say that it stopped the progression for sure, my ms got very agressive before the stem cell transplant.

Also, I am just back since a few days from Bulgaria about ccsvi where I had 2 ballons done in both of my jugulars.

I think that both procedures might be the solution, now I am working on some more improvements since ccsvi.

Regards
Roland

Seems to me that the more neuro.'s cast ccsvi in a neg. way, the more credibility it receives... (and should) It's like telling one lie, that leads to telling another and another.. and so on.

At first I was quite angered and could not believe for a second that a physician would not want to help us... I quickly realized that's not the case. The more I think about it ... hmmm... I hope more neuros. stick their necks out against it.. then, when the truth comes out, they will (and should) fall hard.

So, please neuro.'s, keep spewing the lies and getting defensive... keep making comments on the vascular system in which you were not trained.. keep taking bribes from big pharma, keep dismissing us.. INSTEAD us compassion and HELPING us... It just makes us want to prove you wrong all the more.. keep making fools of yourselves...

The very same Dr.'s that we've developed long standing personal relationships with.. the one's that we felt really cared about our health/ wellbeing and shared "everything" with are completely letting us down. Can you just imagine if they not only embraced ccsvi, but actively sought out answers and referred us to specialists? How about collaborating together? Are you all so egotistical to admit you don't know something? We would all most likely have appointments for testing and treatment by now... YET we sit here and wait!!! We have to fight tooth and claw our way just to get helped.. Damn neuros!!

PS.. what are neuros doing messing around in the oncologists area anyway? and how many pt's did well with chemo. only to eventually fall right back where they left off.. explain that one!!!

a simple out patient balloon angio procedure vs. chemo therapy... which would you choose?... gotta go pull some hair out of my head now...

But the deaths of patients (and there have been quite a few adverse events, er, side-effects, in these ablation trials), are often used to explain denying procedures to other patients. Or with Tysabri, as an explanation for denying drug treatments (insured, or not) to other patients.

See, we have to be careful about how we let those poor mentally incapacitated people spend money. Yes, when it's public money. Also when it's our insuring friends' money. Especially (since they are so vulnerable to being defrauded) when it's their own money. By golly goshkins, we can't allow our own medical peers, board certified or not, to take advantage of these poor misguided people. Do we want to go down in history as the most uncaring, selfish special-interest group ever to take the Hippocratic Oath? Why I heard, in the UK a doctor was convicted of exploiting MS patients with stem cells. By a judge!

And to knowingly let them combine treatments like that! For shame, isn't that why the first Tysabri trials had all those problems with PML? Oh, it wasn't? I thought they said it was combining it with Avonex. Well, sure, people are still getting PML, but the FDA said it was OK, so it must be. That's why Canada does everything the FDA does. Saves money. Oh, they don't? Well, anyway. You know what I mean. If we let all those vulnerable adult patients and caregivers just willy-nilly spend their own money, think what a muddle that would cause!

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

Where is his long term studies?
24 subjects, his sample is to small!
One person died and another one got Liberated as well.
I am sure it is all Snake Oil, or a scam!
You see we can sink to his level as well and compaare him to Dr. Zamboni and make fun of him as well, but we are better than that.
His patients deserve our support as they took a chance, just like we want to. (aries78 I am glad that it worked for you and I feel you may be right about needing both in some cases)

Hello Roland,

congrats on your braveness!
It is very interesting you did both procedure...
could you please tell us about your before/after symptoms?

I mean before chemo, after chemo, and before CCSVI, after CCSVI treatment

i would be really interesting!
thank
alex

[quote="aries78"]hello,

I think that both procedures might be the solution, now I am working on some more improvements since ccsvi.

Hello Roland

I am very intersested in hearing about your "some more mprovements" also about your journey

Silver

people, please note that stem cell therapy in ms might be nothing more than supressing immunity which majority of existing medicines already do ... its probably that it does this at the very source ...

Immune ablation/stem cell treatment does not work for progressive patients...it only works in the active inflammation stage of MS. hmmmm...

We had one of the Stanford patients receive Revimmune (another immune ablating protocol) before she was discovered to have bilateral jugular stenosis. She had relapsed after Revimmune. Dr. Dake opened her veins up last year, and she has moved on from here....EDSS 0.
Dr. Freedman got 4 million dollars for his study. Shouldn't CCSVI get the same?
http://www.mssociety.ca/en/research/ste ... earch.htms

cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Hello,

So, I am gonna try to resume my story because it is a long one, this is the first part:

I am 32 years old born in France, left France when I was 20. I used to live in US during 4 years and then moved to Japan for about 8 years, now I am back in France because of my MS.

First symptoms started back in US with optic neuritis, left leg’sweakness, I was a professional fighter back then and quite young, so I never thought something like MS could happened to me, I really thought it was just injuries from my trainings.

After 4 years spent in NYC, I’ve decided to follow my dream in Japan, I did ok the first few years but still those injuries not healing…
In 2004, I had my last fight that I lost because of my legs: weakness, very bad balance, bad left eye… A few weeks after it, I was invited to visit a friend in Thailand, I really needed vacations, still didn’t know what was happening to me…

That was my first trip there and the first day I arrived, I’ve started to lose my right leg: could not walk, going up the stairs…The heat triggered this attack.
From here, my friend took me to the hospital and that’s when I found out that I had MS. I went back to japan after I’ve recovered, of course that was the end of my carrer and try to start a new life…

Lucky me, all my symptoms stabilize the next 3-4 years and I was able to start my own business in Tokyo. My goal was to save money because I knew that someday MS will be back….
I was going back and force between Tokyo and Bangkok for my work and the woman that I love.
Unfortunatly, in 2008, MS catch up with me, and very fast…up to the point that I could not walk whithout a cane.

In Bangkok, I met the right people during those years and at the time, after lots of reading and talking, the only solution for my MS was the chemo and stem cells.

The doctors and hospital I’ve dealt with had experiences about chemo and stem cells but never with someone and MS…so it wasn’t easy to convince them…but we’ve finally agreed on doing the procedure. My goal was to get better but the doctors told me that this procedure was only to stop the progression.

They took my own stem cells, I went to clean room for about 3 weeks where they destroy my immune system, that wasn’t fun…and they put back my stem cells.

And it really stopped the progression until today, I could feel it, before the procedure, I was going down very fast…but unfortunately, not much improvements…until I heard about CCSVI…(sorry for the long thread).

Am I happy about this treatment after more than one year? of course I am, I will be in wheelchair today if I haven't done it.
Was it easy? No, compare to ccsvi
Will I do it again? I really hope not!
Do I hate MS? hummmm, let me think about that one....

Tomorow, I'll talk about my ccsvi procedure in Bulgaria.

Roland

WOW
MS Society Lobbies Government for $10 Million for Funding Into CCSVI and MS Research

http://www.marketwire.com/press-release ... 159623.htm

Dont understand this. Chemotherapies is rebooting the immunesystem.
But in My world that will not help in long term if you have CCSVI.
The brain will still be toxic and trigging the T-cells again.
In the other way You should not need fix your immunesystem if You fix your veins instead to restore the brain environment.
Or are i missing something here?

you say that CCSVI triggers the immune attack.
Freedman doesnt care about the trigger.
VERY big difference!

its like giving pain killers for a broken leg. Useful, but...

.