So now that they've scientifically "proven" that DMD's

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Re: So now that they've scientifically "proven" that DMD's

Postby CureIous » Sun Jul 22, 2012 6:27 pm

Not sure who is "fighting dmd's" exactly, fact is Mark, we don't have to. I had a phone call from an old friend back in the day, he had been talking to a mutual friend, and happened to mention about my MS CCSVI adventures, seeing that he is the one who drove me to Stanford and back in 2009, had quite a bit to say on the subject.

So said friend calls me, hadn't spoken in years, has an old coworker from the 80's, his daughter mid 30's with MS and very interested in all this of course. I spoke with her for two hours on the phone, and what an interesting case of MS, really got the sense of how unique each of our stories are, and how inapplicable one experience is to the experiences of another.

Her first experience was in childhood, had trouble with walking, was seen by Childrens Hospital in LA, and the best they came away with was her bad posture. She then was to perform certain exercises etc, and that seemed to clear things up though I did find it a bit tantalizing.

Fast forward to 96, sudden optic neuritis flareup, probable MS and we know the drill, that clears up for a time, but now into her mid 30's, what do you know? Walking issues are back, among other assorted symptoms, this around 2007, and on the DMD's she goes.

But those had so many side affects for her, including some that matched her MS symptoms, that she was left asking the question (her words not mine), "I thought these shots were supposed to help me and slow down the process, instead they seem to make things worse".

So they switched her to another drug which she is currently on, but we were in complete agreement as to the fundamental inaffectiveness of these drugs and she needed no prodding to arrive at that conclusion herself.

I've talked to sooo many, mostly in real life not the internet, and I try not to influence one way or the other, but I also harken back to not so long ago, when dmd's left me trashed and feeling like shit for an entire weekend, and that was supposed to be "good for me" at 3k a month.

So, I do consider it of utmost importance, to understand and to KNOW where these blasted drugs came from, who knew what when and how, and how relevant this info is to the average MS'er who may not understand how they are viewed in the grand scheme of things, and it is not very highly by the establishment, so therefore it IS very important to discuss such matters openly, because we may have just taken prima facie a bit too far, so yes it is always good to question. It is a good discussion to have, because it is the ONLY thing the neuros have to throw at our condition, and thats pretty scary, least when one has no other options.

We dont need to war against anything, pharma has had their day in court, and have been found wanting, CCSVI hasnt even filed a case yet, but that wont last forever.

Its not us versus them, its them hoping there may be some crumbs left over at the end.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
User avatar
CureIous
Family Elder
 
Posts: 1200
Joined: Tue Jul 14, 2009 3:00 pm
Location: Riverside, CA

Advertisement

Re: So now that they've scientifically "proven" that DMD's

Postby 1eye » Sun Jul 22, 2012 9:30 pm

I don't know whose disease DMDs are supposed to be modifying, but I was on the R drug for 6 years and my disability progressed just fine. About the same as it did when I stopped taking it. MS is scary. Taking DMDs is scary too. Don't forget why the first cases of PML with the T drug happened. They were on other DMDs too. They tipped the balance from "MS" to death. Drug companies make bucks off expensive drugs, pharmacists take their cut. Neurologists (on paper, anyway) don't make bucks off them unless they are bribed.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
User avatar
1eye
Family Elder
 
Posts: 2876
Joined: Wed Mar 17, 2010 4:00 pm
Location: Kanata, Ontario, Canada

Postby MarkW » Mon Jul 23, 2012 6:03 am

CureIous wrote:Re: So now that they've scientifically "proven" that DMD's do not work, do not delay progression, or do any of the 40k/year things that they told us had been proven by yet other "scientific" studies, I question why anyone would hold such a candle to CCSVI?

I am simply suggesting that if you want to post this topic, do it on another forum. This is "A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis."
Prof Zamboni recommends that de-stenosis for CCSVI syndrome is used in combination with DMDs if the patient is using DMDs already. I already said that only approx 30% of pwMS gain good benefits from DMDs. Why stop if you are in that small group?
I hope as many people as possible give a positive message about CCSVI and do not get distracted by other issues.
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
User avatar
MarkW
Family Elder
 
Posts: 1142
Joined: Thu Oct 19, 2006 3:00 pm
Location: Oxfordshire, England

Re: So now that they've scientifically "proven" that DMD's

Postby 1eye » Mon Jul 23, 2012 8:33 am

The response to interferons is indistinguishable from "placebo" or "no treatment". It does not prevent disability. It is a ridiculously gold-plated solution looking for a problem it can really fix. Neurologists use fear to make you believe you will do worse without it. They probably pay big bucks for famous people to endorse it. Prof. Zamboni is probably loathe to incur the ire of super-rich vendors, so he has to endorse it. He deliberately screwed up his results by having people stay on their DMDs. The only other explanation is that he is kinder and more humane than most researching neurologists. I do not think, with a person with "MS" whom he is married to, he believes any more than I do that by taking them anyone would benefit. It is not kind, though, and may provoke a no-cebo effect, to take away the one thing a person thinks is helping them, even if it isn't.

It is not irrelevant or off-topic to discuss DMDs in this forum. Dr. Zamboni treated "MS" by treating CCSVI. There are political and financial reasons for doctors to frame it as CCSVI-only. If it were not for the powerful interests opposing this treatment, nobody would be afraid to say it treats something they thought was "MS". People are still free to talk.

I read and see on the TV, about how this is an unprecedented uprising of Internet denizens. The story they are missing is the unprecedented campaign to suppress this treatment, by otherwise seemingly reasonable people. Its amazing what a few gigabucks can do.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
User avatar
1eye
Family Elder
 
Posts: 2876
Joined: Wed Mar 17, 2010 4:00 pm
Location: Kanata, Ontario, Canada

Re: So now that they've scientifically "proven" that DMD's

Postby Cece » Mon Jul 23, 2012 8:58 pm

Here's the title of the article I read: "Widely Prescribed MS Treatment May Not Slow Progression of Disease." http://www.sciencedaily.com/releases/20 ... 162736.htm
If CCSVI treatment is an alternative to regular MS treatment, it is useful to know how effective the current standard of care is.
I think it is a fair assessment to say that the current standard of care is dismal.
Cece
Family Elder
 
Posts: 8990
Joined: Mon Jan 04, 2010 4:00 pm

Re: So now that they've scientifically "proven" that DMD's

Postby fernando » Wed Jul 25, 2012 11:05 pm

mmmmhh.

Old dmd's do nothing. But we have "new" and better dmd's (tysabri, fingolimod) that work (and that in 20 years will be found useless). Great timing by Big Pharma.
User avatar
fernando
Family Elder
 
Posts: 228
Joined: Wed Jul 15, 2009 3:00 pm
Location: Argentina

Previous

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

Who is online

Users browsing this forum: No registered users