Definitions

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Definitions

Postby Lyon » Fri Sep 15, 2006 10:53 am

oo
Last edited by Lyon on Sat May 07, 2011 9:01 am, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Advertisement

cured

Postby gwa » Fri Sep 15, 2006 4:03 pm

I don't believe a "cure" will come through until we know the cause. To me a cure means being returned to "normal" with all my parts working properly.

gwa
User avatar
gwa
Family Elder
 
Posts: 846
Joined: Thu Dec 01, 2005 4:00 pm

Re: cured

Postby Lyon » Fri Sep 15, 2006 4:34 pm

oo
Last edited by Lyon on Sat May 07, 2011 8:59 am, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby mrhodes40 » Fri Sep 15, 2006 6:20 pm

My personal goal for a treatment would be that it would stop progression and allow whatever healing CAN occur to occur, though without regenerative strategies ie new neural stem cells, I do not believe all function will come back and I base this on historical experience related to polio.

People who had polio and suffered paralytic effects ( which were very rare by the way-the majority of people who had polio experienced mild unremarkable symptoms,- see the american Centers for Disease control here http://www.cdc.gov/nip/diseases/polio/faqs.htm - with a tiny less than 1 percent experiencing paralysis Interesting considering 99% did not paralyze and 90% did not even know they were ill---this to me lends credence to the infective theories for MS ) later developed what has been termed post polio syndrome. It has been theorized that the nerves that were hit by the polio made whatever level of recovery they did by the nerves remaining in those areas reaching out to go around the damaged ones. This resulted in a weaker motor function and some small deficit, for example a limp in a leg in a leg that had been completely paralyzed by the polio. That nerve "work around" fatigues more easily than the original nerve did and is more fragile too. As people who had polio as a child age, they are suffering renewed loss in those areas that had been impacted. One of my sisters best friend's mom had had polio as a child and she could walk normally for a while back then, for example if you were visting for dinner she seemed normal but she would get weak and limp more and more and use a cane as she got tired for example as when we shopped at the mall. My sister told me recently this woman is now using a walker as the weakness got progressive after time, typical post polio stuff.. I would assume this would be similar to MS recovery as well better but not back to "normal".

I believe this model will likely hold for MSers when a progression stopping strategy is discovered. The originally impacted leg or whatever, though it may recover a large part of it's function, will always be weaker and may have some limp or some remains of the original paralysis, especially when stressed such as wallkng a long distance etc.

For me, knowing I will not progress any further or might suffer perhaps symptoms I have already had is not scary, what scares me is the unknown, new and worse losses than I already have had or a huge exacerbation that sends me to a nursing home, or causes me to see my life as not worth living.
marie
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby robbie » Fri Sep 15, 2006 6:31 pm

bob , marie said it all
For me, knowing I will not progress any further or might suffer perhaps symptoms I have already had is not scary, what scares me is the unknown, new and worse losses than I already have had or a huge exacerbation that sends me to a nursing home, or causes me to see my life as not worth living.
User avatar
robbie
Family Elder
 
Posts: 1148
Joined: Thu Jan 27, 2005 4:00 pm
Location: Northern Ontario, Canada

Postby mrhodes40 » Fri Sep 15, 2006 6:33 pm

oops double post.....HOw'd that happen? :oops:
marie
Last edited by mrhodes40 on Sat Sep 16, 2006 11:15 am, edited 1 time in total.
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby Lyon » Fri Sep 15, 2006 6:47 pm

oo
Last edited by Lyon on Sat May 07, 2011 9:00 am, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby scoobyjude » Fri Sep 15, 2006 9:05 pm

I totally agree with Marie. I have always thought that if they could find something that stops progression and something that can remyelinate and protect, that to me would be more than I could hope for. I agree that finding a "cure" is probably not possible until they fully understand what causes MS. I say probably because there is always the chance that a medication developed for something else could "mistakenly" cure MS before they truly understand it's complexity. I doubt we will be that lucky though. Also, we hopefully we won't fall into the post-Polio syndrome if they gain further knowledge and can prevent regression later in life. Either way, the most important thing is to find a way to stop progression. I can deal with the problems I have a whole lot better if I'm not always having to deal with new or worsening symptoms. I truly think the goal of stopping progression is attainable within the next 10 years. At least that's what I'm betting on :D
User avatar
scoobyjude
Family Elder
 
Posts: 516
Joined: Sat Feb 18, 2006 4:00 pm
Location: suburb of Chicago, IL USA

Postby bromley » Sat Sep 16, 2006 12:26 am

Here is the Canadian MS Society's definition of a cure:

For people living with multiple sclerosis the “cure” means different things to different people. For people who have just been diagnosed, the cure will stop MS in its tracks. For people who have lived with MS and have experienced loss of mobility and other serious impairments, the cure means repair of the nervous system and recovery of lost functions.

For people with a family history of MS, the cure will allow their children or grandchildren to live a life free from MS.

The research funded by the MS Society addresses all three definitions of a cure. Research is multi-faceted but with clear purpose: to find a cure for MS, protect the nervous system and repair damage caused by MS, and improve monitoring and management of the disease.


Earlier this year I corresponded with the head of research at the US MS Society. He said:

the recent advances in molecular biology, cell culture techniques, and in deciphering the human genome provide unprecedented opportunities to tackle MS, TODAY. With our current technologies, new therapies abound in various stages of development. I am convinced th at technology will enable us to stop this disease well before we know how to prevent it. Those involve different “cures”. But it is our responsibility to vigorously tackle each of the three cures: stopping disease activity/progression, repairing the nervous system, and preventing the disease altogether. These will require different strategies and different technologies. We are aggressively pursuing all three and I am certain that you will be impressed as you witness the developments of the upcoming years.


Ian
User avatar
bromley
Family Elder
 
Posts: 1887
Joined: Fri Sep 10, 2004 3:00 pm

Postby robbie » Sat Sep 16, 2006 6:19 am

lets hope Ian
I am certain that you will be impressed as you witness the developments of the upcoming years.
User avatar
robbie
Family Elder
 
Posts: 1148
Joined: Thu Jan 27, 2005 4:00 pm
Location: Northern Ontario, Canada

Postby HarryZ » Sat Sep 16, 2006 6:38 am

Trying not to sound pessimistic, I have followed MS research for over 40 years now. The kind of comments that the MS Societies of the world and MS docs are making today are not that much different than they were 20-30 years ago. Of course the scientific knowledge that we have today is heads and shoulders above what existed years ago and immunology, DNA and gene advancements have been incredible.

But, when it comes to MS, where really do we stand? The basic easy answer is no known cause, nothing remotely close to a cure and the continued use of powerful, immune system altering drugs to try and stop the disease. While these therapies "shake" up the immune system and provide changes (some positive, others negative) life for the MS patient continues to be a huge struggle.

From what is stated today, you have an active remitting/relapsing form of the disease which involves inflammation of the myelin. The cause of this has many theories but no answers. As the disease continues, axonal damage takes place and that, so far, is irreversible. Only when the docs figure out a way to regenerate axons can there by any hope of fixing this part of MS. Perhaps stem cells might be the answer but that is likely years away.

The focus of MS research is to try and prevent the immune system from attacking the myelin. There has been some limited success in this area but the disease continues to move on despite the variety of treatments that are used. And this line of research has been focused upon for a few decades now with little else being done.

The good news is that in the past few years the researchers are looking into other areas and new ideas are being investigated. As one MS doc told me once, he felt that the answer would be stumbled upon by one of these researchers. Hopefully the law of probability will work for MS and someone, somewhere will come up with the "cure" we've all been desperately waiting for.

Harry
User avatar
HarryZ
Family Elder
 
Posts: 2557
Joined: Tue May 25, 2004 3:00 pm
Location: London, ON, Canada

Postby bromley » Sat Sep 16, 2006 7:44 am

Harry has unfortunately seen a long history of hopeful claims that did not materialise. But he is quite right that there have been huge advances in terms of genetics etc. The other huge advances relate to technology - computer power, scanners etc etc. And of course the internet where researchers in Australia can look at research produced in the UK the second it is published on the web.

I'm sure 25 years ago women with breast cancer were told that there was no effective treatment and today there are a range of effective therapies. Yesterday in the news was an article about a US woman with a robotic arm that was operated by her brain signals.

The world of neurology has lagged behind in terms of real breakthroughs for diseases such as ALS, Parkinsons and MS. Hopefully, they will catch up.

The funding for MS research is at an all time high. More attention is being given to repair and protection. One of my neuros, Dr Giovannoni, has received a huge grant to look at repair and protection.

http://www.nationalmssociety.org/promise2010.asp

But it might be that other breakthroughs come from other areas of research.

Stem cells research also has great potential. One of the UK's top MS academics thinks he might start human trials in 12-18 months. There will of course be ups and downs but hopefully something positive will result.

So I agree with Harry that progress looks slow and there are some big questions still to be answered. But if I was given the choice of being dx in 2004 (when I was) or 1974, I would certainly choose the former.

Ian
User avatar
bromley
Family Elder
 
Posts: 1887
Joined: Fri Sep 10, 2004 3:00 pm

Postby Minai » Sat Sep 16, 2006 12:04 pm

Am following this thread with much interest...What a wealth of information and experience! :)

Ian, and HarryZ, I, too, will believe it when I see it. Lots of hope, but probably much less faith than either of you in the possibilities of recovering damages. :(

Marie, I had read once, on an MS site, that MS is considered the "polio of the 90's." I was exempted from all childhood vaccines, because of my mother's religious beliefs. I caught most of the diseases, except diptheria, tetanus, and polio (that I know of anyway, since I wasn't seen by doctors, then, either). But, as an adult, I did try to catch up on vaccines. However, the doctors have all told me that they no longer vaccinate for polio, because they consider it already erradicated. Still, have always wondered about the possibilty of contracting it. That would just be all I need, on top of MS :x

Anyway, Marie, I very much appreciate your polio analogy and how it relates in this discussion :)

Minai (whose experience on Doxy and Samento is going much, much better than expected, thus far!)
User avatar
Minai
Family Member
 
Posts: 87
Joined: Sat Mar 18, 2006 4:00 pm

Postby Lyon » Sat Sep 16, 2006 12:36 pm

oo
Last edited by Lyon on Sat May 07, 2011 9:00 am, edited 4 times in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby scoobyjude » Sun Sep 17, 2006 11:16 am

While it's true that promises have been made for years by MS researchers of finding a cure, I do believe that today they are gaining the knowledge to actually back up those claims. I'm not saying that they are going to find a cure tomorrow, they are probably still a long way off but maybe in the not too distant future. I'm also not saying that I believe every claim made by every trial or drug company. The hope that I cling to is that they will find a way to repair damage and hopefully stop progression. Because repairative strategies would help so many different diseases, research in this avenue is going full speed. That is why I believe that this goal will be attained soon. This might seem naive to some who have dealt with this disease a lot longer than I have and seen hope come and go. I know as well as all of you what the future may hold. I would rather believe that a different future may be a reality. If that is naive, so be it. I can't imagine living my life without hope. It is what keeps me going. I truly believe that real progress is being made and one day maybe their promises will come true. I guess my point is that none of us should lose hope. Even if the hope lies not in a "cure" but a better quality of life, that is progress. Ok, sorry if I sounded like a total Pollyanna. I'm done now.
User avatar
scoobyjude
Family Elder
 
Posts: 516
Joined: Sat Feb 18, 2006 4:00 pm
Location: suburb of Chicago, IL USA

Next

Return to General Discussion

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service