The Canadian MS Society is not happy...

[Marigold2]

I am happy for your friend, how wonderful to get one's life back. The US is not the only place on this earth that provides good medical care we are not front runners on many drugs either.
If a person is ill the should have the right to go any where in the world and get medical treatment that they deem and their family and love ones deem is best for them.
Didn't Farrah Fawcett go to Germany for treatment?
We have doctors without boarders how about patients without them?

[Catty1]

My sister died of MS just over 4 years ago. If there had been a snowball's chance in hell that this might have worked for her, we would have gone for it.

She was brilliant and fun, and then not much more than a breathing corpse the last 2 years of her life. She was 48 when she died.

Hence, I do react strongly to this.

ETA: It's not so much the question of research being suppressed - it's more the pharma companies that produce the very expensive meds for MS.

[pomtzu]

Didn't Farrah Fawcett go to Germany for treatment?

Yes - and didn't she die??? She didn't want conventional treatment because she didn't want to have to "wear a bag". The conventional treatment might well have saved her if she had started early enough.

A friend of mine was diagnosed with colon cancer when in her 30's, and she declined chemo and opted for a radical treatment consisting of coffee enemas and there was something with sea shells involved - can't remember what. Of course she died. She was a very tiny, petite girl,, but looked like a shriveled up 90 year old lady, in a semi fetal position, laid out in that coffin. She left behind a husband and 2 small children. Her husband told me later, that the doctors were certain she would have survived if she had taken the chemo and radiation.

So these experimental, unproven, radical and dangerous miracle treatments, are much of the time, a death sentence, or at best, of no permanent value. False hope that they offer, usually only benefits the people that peddle their wares.

[Catty1]

http://calgary.ctv.ca/servlet/an/loc...ub=CalgaryHome

Alta. woman returns home after undergoing controversial procedure for MS

Christine Engelhardt spent thousands of dollars on controversial MS treatment in Costa Rica.

Updated: Wed Sep. 01 2010 16:56:35

ctvedmonton.ca


A Stony Plain nurse is back home after receiving a controversial new treatment for multiple sclerosis in Costa Rica.

Christine Engelhardt has been living with MS for 10 years. She says one of her first symptoms was blindness in her left eye.

Engelhardt is now one of many MS sufferers who've chosen to travel out of the country to receive the liberation treatment, which involves the widening of the veins.

The procedure is based on research from an Italian doctor who found blocked veins in some MS patients could be reversed by a procedure similar to balloon angioplasty. Several countries are offering the treatment and have reported successful results but it is still not available in Canada.

Engelhardt spent $20,000 to obtain the treatment in Costa Rica. She says two weeks ago she couldn't pour coffee without spilling because her hands had no strength. Her symptoms also included headaches, loss of balance, and severe muscle spasms.

"My fatigue was insane. I couldn't make it through a whole day," she said.

She says after undergoing the treatment in Central America, she felt instant change.

"When I first woke up from the anesthesia I could feel my left foot, which I haven't been able to feel for about two years."

Engelhardt says she is disappointed the treatment hasn't been approved in Canada.

"I just wish everyone had this opportunity to feel better because we deserve it...we deserve the choice."

On Wednesday, officials announced the federal government would not fund clinical trials in Canada.

"There's no evidence that venous insufficiency is linked in any way to multiple sclerosis," said Dr. Alain Beaudet with the Canadian Institute of Health Research.

Health Minister Leona Aglukkaq said the federal government will assemble a working group to study data from seven studies of the treatment, which are now underway.

"To ensure that we have the evidence to support this procedure, we need to do the research," Aglukkaq said. "And once we have that, we will proceed -- if there is enough evidence from the seven research projects already underway around this subject -- we will proceed with pan-Canadian clinical trials. We will support that. At this point in time, we do not have the evidence to proceed."

Aglukkaq said the studies are expected to take two years to complete.

With files from Susan Amerongen and CTV.ca News Staff

**********************************************
Countries that are offering the procedure: Scotland, Germany, India, Poland, Costa Rica...that's all I know of. The first two, at least, aren't "third-world" countries.

[pomtzu]

I sincerely wish all the people who have had this treatment, lasting results, and that it proves to be positive, and not just a temporary fix - a very small bandaid if you will - on a very large wound.

I personally would be interested to see where they stand a year or two after the initial treatment, and if it has to be repeated.

[Catty1]

You and me both, Pomtzu.

My friend Neil is proceeding immediately to physiotherapy via his GP; guess he is striking while the iron is hot. Hope it works for him.

$20,000 (last reported cost in Scotland was $8,000+) is barely a year's salary for some ($20,000 would be a dream for me! ). Given what a patient and their family(ies) might spend on everything from meds to home care to losing wages being a caregiver, I suppose this price doesn't seem so bad. Neil had a companion fly with him to help him, and most if not all airlines allow a companion to fly at half price.

I hope the people that have benefitted from this have some sort of follow-up plan to try and move forward. It's like a heart attack, in a way - one doesn't go back to daily fatty fast foods and smoking and over-indulging in booze.

If this treatment even only gives people a break from this illness for 2 months...I wonder if the cost might be worth it?

And - if the results are often temporary, and the veins clog again - THAT might even provide a huge clue as to how to treat this disease in a more permanent way.

My sister's case was too advanced for trials of medications (many of which work well - have heard good things about Avonex). Also - the existing meds were not recommended for her. Reason? It's a dubious "benefit" of so-called "socialized medicine". Provincial governments cover the costs of these meds - some of them run $10,000 a month. Therefore MS specialists prescribe the medications for cases where they will do the most good - ie, less severe cases.

NB: Just as an example, for the drug trials, a person with MS has to be able to walk the length of a football field. And the first stage of the trial is done on healthy people to establish a safe dosage.

[pomtzu]

NB: Just as an example, for the drug trials, a person with MS has to be able to walk the length of a football field. And the first stage of the trial is done on healthy people to establish a safe dosage.

IMO - sounds pretty darned ridiculous - both counts.

If you can walk the length of a football field, then you can't be that bad - very early stages I would think, or a much less severe form.

And healthy people being used to establish safe levels???? How can levels of safety be measured if the person being tested, doesn't even have MS??? A person with MS, and one without, will respond differently I would think. Of course, I'm no doctor or researcher, so what do I know???

[Asiel]

You'd be surprised at how much you know Pom.
Canada and Britain are the two hot spots for MS. I don't think there are too many people who don't have a family member that isn't suffering from ms.
One of my closest friends is totally paralyzed from the head down, fed by tubes and can barely whisper, she's been like this for 7 yrs now. Most of the time she is sleeping but when she's awake she enjoys our company. We've not once heard her say she would rather be dead than living like this. And neither has her husband or daughter ever mentioned this.
There are so many people out there who have ms and all are at different stages.
The drug trials you find ridiculous are just that...ridiculous. We have a large center 8 hours away who conduct trials and this is just not so. It goes to show to what extent the media and gossip have people believing crap like this. A few people that I know took part in the trials, they discussed it in whole with our society and nothing like that takes place...ever...

Everyone would like to see a cure for this disease but so far because of the differences in just about every patient nothing that works for one will work for everyone. But that doesn't mean to say patients should be putting their lives in danger because of some hype.