This Is MS Multiple Sclerosis Community: Knowledge & Support

Welcome to the world's leading forum on Multiple Sclerosis research, support, and knowledge. For over 10 years, This is MS has provided an unbiased community dedicated to Multiple Sclerosis patients, caregivers, and affected loved ones.
It is currently Thu May 23, 2013 11:44 am


All times are UTC - 8 hours [ DST ]




Post new topic Reply to topic  [ 48 posts ]  Go to page 1, 2, 3, 4  Next
Author Message
PostPosted: Thu Jun 07, 2012 4:49 pm 
Offline
Newbie

Joined: Thu Jun 07, 2012 4:47 pm
Posts: 1
So my sister has MS. And the more i read about the more scarier it gets. Apparently all the medications arent all that effective.


Top
 Profile  
 
PostPosted: Thu Jun 07, 2012 6:01 pm 
Offline
Family Elder
User avatar

Joined: Thu Feb 04, 2010 4:00 pm
Posts: 520
Location: Hawaii
there will never be a cure if you're waiting for the drug companies, why stop(cure) a multi billion $ industry. you are right the DMD's arent effective

its up to her, change diet to fruits, vegetables, and fish. exercise

i personally use a exercise bike with fruits and vegetables, i havent felt better since preMS

take vitamin D, E, omega 3, b12

tumeric, ginger i forget what else are strong anti inflammatory foods. there are others but i forget


Top
 Profile  
 
PostPosted: Fri Jun 08, 2012 5:56 am 
Offline
Family Elder
User avatar

Joined: Tue May 25, 2004 3:00 pm
Posts: 2111
Location: London, ON, Canada
Godot wrote:
So my sister has MS. And the more i read about the more scarier it gets. Apparently all the medications arent all that effective.


Back in the 80's, my wife (since passed away)who had MS, was told many times that a "cure" was just around the corner. Same in the 90's. Same at the beginning of the new century. Sure seems to be a very long corner!!

It wasn't until a few years ago that some researchers starting looking into other areas (other than the decades old autoimmune theory) for some answers. While some interesting alternative ideas have surfaced, the cause of MS has still remained very elusive. So how does one cure a disease that nobody knows the cause?

I'm afraid that as long as the drug companies continue to push their very powerful drugs on to MS patients as the "answer", a cure for this lousy disease is still some time away. I won't even guess how long at this point although I hope it's closer than it was back in the 80's.

Harry


Top
 Profile  
 
PostPosted: Fri Jun 08, 2012 6:26 am 
Offline
Family Elder
User avatar

Joined: Sun Nov 22, 2009 4:00 pm
Posts: 331
MS research has really branched out in the past few years, and there have been some very promising breakthroughs. I think the next 3 years will bring some totally new treatments to the mainstream. Things like CCSVI, diet, and stem cells may be where the most success is found. True today's meds are not really effective, but they do seem to help some. CCSVI treatment seems to help many. Check out these website for lots of insight and hope:

http://www.myelinrepair.org/
http://www.direct-ms.org/
http://www.ccsvi.org/
http://annetteconnection.com/


Top
 Profile  
 
PostPosted: Fri Jun 08, 2012 8:40 am 
Offline
Family Elder
User avatar

Joined: Wed Aug 11, 2004 3:00 pm
Posts: 1610
If by "cure", you mean something available to people with MS and not just a lab discovery, I'd say it's highly unlikely that there will be a cure in the next 10 years. It often takes around 10 years for substances to go through the 3 phase clinical trial process and gain regulatory approval, and at best it takes around 8 years. So, to meet the 10 year deadline, the cure has to be in human trials already, or will have to enter trials in the next 2 years. It is possible, but it seems like a long-shot. But I still think the cure is just around Harryz's "long corner".


Top
 Profile  
 
PostPosted: Fri Jun 08, 2012 9:04 am 
Offline
Family Elder
User avatar

Joined: Tue May 25, 2004 3:00 pm
Posts: 2111
Location: London, ON, Canada
dignan wrote:
If by "cure", you mean something available to people with MS and not just a lab discovery, I'd say it's highly unlikely that there will be a cure in the next 10 years. It often takes around 10 years for substances to go through the 3 phase clinical trial process and gain regulatory approval, and at best it takes around 8 years. So, to meet the 10 year deadline, the cure has to be in human trials already, or will have to enter trials in the next 2 years. It is possible, but it seems like a long-shot. But I still think the cure is just around Harryz's "long corner".


Dignan,

I agree with your math and unless some researcher stumbles across an amazing discovery, your time line is likely accurate.

As for my "corner".....I don't think it's getting any shorter!

Harry


Top
 Profile  
 
PostPosted: Fri Jun 08, 2012 10:34 am 
Offline
Family Elder
User avatar

Joined: Mon Sep 10, 2007 3:00 pm
Posts: 4679
Location: southern California
Welcome, Godot---

hope we can help you while you're waiting....you've got some great advice, and words from many wise people with MS and those who love them.
My husband was diagnosed 5 years ago, and like you--the literature and info I found was dismal.
My husband's neuro didn't offer much hope---again, like you and many others, I got online and tried to learn.
He's doing well now, no MS progression or new symptoms, reversal of gray matter atrophy, and he's in better health than before.

I look at it this way...there's no "cure" for a stroke. There's a genetic predisposition, and then you have an "event."
We still do not understand what the event is which creates MS.
But there's good news-- there can be rehabilitation, recovery, slowed progression and a new life.
Read up on nutrition (Swank Diet, George Jelinek's program, Dr. Terry Wahls) and you'll see the connection in a healthy fat, high antioxidant diet, stress relief, vitamin D, exercise and slowed MS progression and symptom relief. If you want to learn more about the vascular connection that looks at veins, check out http://www.ccsvi.org

An MS diagnosis doesn't always mean fast progression and misery....most people start out relapsing remitting and do OK. It's a challenging diagnosis, but there is much your sister can do for herself, which can be empowering. You are a good brother to be there for her.
cheer

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


Top
 Profile  
 
PostPosted: Fri Jun 08, 2012 2:19 pm 
Offline
Volunteer Moderator
User avatar

Joined: Sat Nov 20, 2004 4:00 pm
Posts: 2716
Thirty years ago, Henry Gadsden, the head of Merck, one of the world’s largest drug companies, told Fortune magazine that he wanted Merck to be more like chewing gum maker Wrigley’s. It had long been his dream, he said, to make drugs for healthy people - so that Merck could "sell to everyone."

Gadsden’s dream now drives the marketing machinery of the most profitable industry on earth.

Using their dominating influence in the world of medical science, drug companies are systematically working to widen the very boundaries that define illness. Old conditions are expanded, new ones created, and the markets for medication grow ever larger. Mild problems are redefined as serious illness and common complaints are labeled as medial conditions requiring drug treatments. Runny noses are now allergic rhinitis, PMS has become a psychiatric disorder, and hyperactive children have ADD. When it comes to conditions like high cholesterol or low bone density, being "at risk" is sold as a disease in its own right.

Selling Sickness reveals how widening the boundaries of illness and lowering the threshold for treatments is creating millions of new patients and billions in new profits, in turn threatening to bankrupt health-care systems all over the world. As more and more of ordinary life becomes medicalized, the industry moves ever closer to Gadsden’s dream: "selling to everyone."


Top
 Profile  
 
PostPosted: Fri Jun 08, 2012 2:40 pm 
Offline
Family Elder

Joined: Fri Feb 17, 2012 5:35 pm
Posts: 121
The only present cure or near-term cure (less than 10 years at least) seems to be stem cell treatment with chemo. It is very expensive and will remain financially out of reach for the vast majority of patients. BG12, a new drug coming out later this year, may help reduce progression more effectively that the current drugs and with less toxicity.

Otherwise, diet and the current host of DMDs is about all their is. CCSVI is of questionable benefit - helps some and hurts a few - but it does not appear to be a cure.


Top
 Profile  
 
PostPosted: Fri Jun 08, 2012 3:45 pm 
Offline
Family Elder
User avatar

Joined: Tue May 25, 2004 3:00 pm
Posts: 2111
Location: London, ON, Canada
FLJhawk wrote:
The only present cure or near-term cure (less than 10 years at least) seems to be stem cell treatment with chemo.


I'm not sure that I would agree with your opinion on stem cell treatment. A person's immune system is literally wiped and a new immune system introduced with the stem cells. The chemo is to wipe out the immune system. It is a very high risk procedure and you can imagine what it does to a patient's entire system.

But the treatment is based on MS being an auto-immune disease and it's the immune system causing the damage in the first place. In the past few years that theory has really been questioned. If there is another cause to MS then stem cell treatment is a big mistake!

Harry


Top
 Profile  
 
PostPosted: Fri Jun 08, 2012 6:57 pm 
Offline
Family Member
User avatar

Joined: Thu Dec 09, 2004 4:00 pm
Posts: 53
HarryZ wrote:
FLJhawk wrote:
The only present cure or near-term cure (less than 10 years at least) seems to be stem cell treatment with chemo.


I'm not sure that I would agree with your opinion on stem cell treatment. A person's immune system is literally wiped and a new immune system introduced with the stem cells. The chemo is to wipe out the immune system. It is a very high risk procedure and you can imagine what it does to a patient's entire system.

But the treatment is based on MS being an auto-immune disease and it's the immune system causing the damage in the first place. In the past few years that theory has really been questioned. If there is another cause to MS then stem cell treatment is a big mistake!

Harry



Hey Harry, I don't think it's so much opinion at this point as it is fact. There have been a few clinical trials that have proven the success of High Dose Chemo with HSCT. Though it may not be a permanent cure it has been used with great success as a treatment in patients who are still in the RRMS phase of M.S. The clinical trial findings using this method have been posted on this site so they are worth a look. In fact didn't your old friend Bromley go through something similar and proclaim that he had his life back and had no reason to visit this site again? Of course i'm paraphrasing here but it was something to that effect, no?


Top
 Profile  
 
PostPosted: Fri Jun 08, 2012 10:04 pm 
Offline
Family Elder
User avatar

Joined: Fri Dec 10, 2010 4:00 pm
Posts: 346
Whilst not a complete cure Helminthic Therapy is increasingly looking like a useful modifying therapy that reduces relapses and slows the rate of progression. Furthermore it is within the realms of affordability for most people at less than $1000 a year.


Top
 Profile  
 
PostPosted: Sat Jun 09, 2012 5:38 am 
Offline
Family Elder
User avatar

Joined: Tue May 25, 2004 3:00 pm
Posts: 2111
Location: London, ON, Canada
Quote:
Hey Harry, I don't think it's so much opinion at this point as it is fact. There have been a few clinical trials that have proven the success of High Dose Chemo with HSCT. Though it may not be a permanent cure it has been used with great success as a treatment in patients who are still in the RRMS phase of M.S. The clinical trial findings using this method have been posted on this site so they are worth a look. In fact didn't your old friend Bromley go through something similar and proclaim that he had his life back and had no reason to visit this site again? Of course i'm paraphrasing here but it was something to that effect, no?


The results they have got from this procedure have also been obtained from those who use Tysabri, Avonex, Rebif etc. HSCT, of course, is a much more invasive procedure, shakes up one's immune system to the max and is very high risk.

The drug therapies also have been total failures to many patients as has been HSCT. If MS was indeed a disease caused by the failure of one's immune system, these procedures would likely have a very high success rate which of course they don't. I'm convinced that some other mechanism is causing the original problem and the immune system is but one part of the resulting symptoms. Shaking the hell out of that patient's immune system gives some positive results, some neutral results and some worsening results. It's really a crap shoot with any benefits all over the map.

If nothing else, it buys the patient some time but then that happens to some who use strict diet,proper exercise and healthy living habits.

Which in the end makes it extremely difficult for any MS patient to try and decide what's best for him or her. We all know what works for one can be a disaster for the next person. One only needs to ask the the 250 patients who have contracted PML after using Tysabri!

Harry


Top
 Profile  
 
PostPosted: Sat Jun 09, 2012 11:56 am 
Offline
Family Member

Joined: Fri Jun 01, 2012 4:20 am
Posts: 27
cheerleader wrote:
Welcome, Godot---


He's doing well now, no MS progression or new symptoms, reversal of gray matter atrophy, and he's in better health than before.


cheer


How are you sure of this?


Top
 Profile  
 
PostPosted: Sat Jun 09, 2012 1:30 pm 
Offline
Family Elder
User avatar

Joined: Sun Jan 16, 2011 4:00 pm
Posts: 247
ScaredofMS wrote:
cheerleader wrote:
Welcome, Godot---


He's doing well now, no MS progression or new symptoms, reversal of gray matter atrophy, and he's in better health than before.


cheer


How are you sure of this?


She fails to mention that her husband is on Copaxone, yet attributes 100% of his benefits from the CCSVI procedures. Seems hypocritical to me.


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 48 posts ]  Go to page 1, 2, 3, 4  Next

All times are UTC - 8 hours [ DST ]


Related topics
 Topics   Author   Replies   Views   Last post 
There are no new unread posts for this topic. Accelerated Cure Project: The Cure Map

Thomas

1

1154

Wed Jan 30, 2008 7:12 pm

rainer View the latest post

There are no new unread posts for this topic. Another cure

bromley

7

1511

Tue Jan 17, 2006 11:44 am

dignan View the latest post

There are no new unread posts for this topic. Do you really think there will be a cure?

[ Go to pageGo to page: 1, 2, 3, 4 ]

westwood

53

5617

Wed May 27, 2009 6:25 pm

Thomas View the latest post

There are no new unread posts for this topic. Boston Cure

Cathy

0

1252

Fri Jan 28, 2005 11:20 am

Cathy View the latest post

There are no new unread posts for this topic. Scientists in NZ say they have a cure!

[ Go to pageGo to page: 1, 2 ]

noddlebean

20

3885

Sat Apr 30, 2005 7:04 am

Anecdote View the latest post

 


Who is online

Users browsing this forum: No registered users


You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum

Search for:
Jump to: