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Posted: Tue Oct 03, 2006 8:27 am Post subject: Progressive stage
The thing that still stuns me about this disease is the lack of treatments for the progressive phases - the really crap phases in my view, when disability starts ramping up. The is a question from the MS Society Canada and really illustrates how piss poor treatment options are.
Joined: May 26, 2004 Posts: 1383 Location: London, ON, Canada
Posted: Tue Oct 03, 2006 8:53 am Post subject: Re: Progressive stage
Hi Ian,
bromley wrote:
The thing that still stuns me about this disease is the lack of treatments for the progressive phases - the really crap phases in my view, when disability starts ramping up. The is a question from the MS Society Canada and really illustrates how piss poor treatment options are.
For years now, there has been very little research involved in trying to help advanced, progressive MS. I'm assuming that once axons die, there is nothing that can be done about it. That leaves little incentive to try and solve the problem with few researchers and funding being available.
Yes Ian, this is disappointing at best. What stuns me is being unable to get into early drug trials. Its hard to qualify at this stage, "EDSS is too high" and the only reason for this is I may not make the trial outcome look good? Let me in the trial and don't count me in results if I do not make good progress.
Tysabri may have taken me in but I did not want to try after reports of deaths.
This is another reason I am so thankful for abx - it gives me an option, I can keep working on this disease, I do not have to give up the fight.
Posted: Tue Oct 03, 2006 10:36 am Post subject: SPMS
There is really nothing that a neuro can do for a person with SPMS or PPMS that is of any benefit to us. This is why I do not go to neuros anymore.
When I look at the drug pipeline, it is so encouraging for MS patients. Prior to 10 years ago, there was NOTHING to look forward to as far as having a treatment for MS.
If I were just diagnosed, I would be thankful for the drugs nearing the market that will really do something about this disease.
It should be easier for newbies to look forward and not wallow in self pity than it was for the old geezers like me.
I would like to drop kick many of the whiners that make up some of the MS boards because they have so much more medical help available to them than patients like me ever had.
Because of ECTRIMS, there is a lot of information online now about MS. I have been reading for hours daily about coming treatments, even for the progressive forms.
Things are definitely looking better for us and it appears that the technology is almost there now to get the culprits causing the disease and fix us up soon.
Joined: May 26, 2004 Posts: 1383 Location: London, ON, Canada
Posted: Tue Oct 03, 2006 11:46 am Post subject: Re: SPMS
GWA,
Quote:
I would like to drop kick many of the whiners that make up some of the MS boards because they have so much more medical help available to them than patients like me ever had.
While I won't disagree with you, the situation with MS today is all very relative. When my wife got diagnosed back in 1971, there was really nothing available. Even when she turned SPMS in the mid 90's there was little one could obtain to help with the disease. So you tried to accept the conditions at the time.
Today, with so many more drugs to manage the symptoms, there is naturally a lower level of psychological tolerance to the many associated problems one has with the disease. And a couple of years from now, it will change again.
Posted: Tue Oct 03, 2006 12:14 pm Post subject: Re: Progressive stage
wiggy wrote:
Let me in the trial and don't count me in results if I do not make good progress.
What you're asking is not possible. That's called experimenter bias and careers have been lost due to that very thing. If it becomes known that a researcher selectively eliminated parts of their data set in order for their results to look better, they would be rightfully blasted by the scientific community.
NHE,
I am not really serious - just talking about this and shouldn't have even said this - I am sorry.
I know all about research bias as my career was research before MS got me. I wish I could say I helped someone in need due to compassion, for example, I put someone in a study, they recover from serious illness and I lose my career as a result as I really screwed up the study - its a better story. Instead I say, research was unable to help me and I lost my career.
Joined: May 04, 2006 Posts: 3456 Location: Mid-Michigan
Posted: Tue Oct 03, 2006 4:12 pm Post subject: Re: Progressive stage
bromley wrote:
The thing that still stuns me about this disease is the lack of treatments for the progressive phases - the really crap phases in my view, when disability starts ramping up. The is a question from the MS Society Canada and really illustrates how piss poor treatment options are.
Ian
Dr Freedman put into words something I had deduced but wasn't sure of..
Quote:
wherein the nervous system slowly loses neurons and axons (cells and wires); thought to be a direct result of all the accumulated inflammation that has gone unchecked.
Ian, I've seen that you share my optomism for some of the treatments which hopefully are just around the corner.
In the past the mindset directing MS research and treatments has seemed kind of like the dutch boy trying to control a massive dike leaking in multiple places. Obviously it's always harder and less effective to react to a situation which is already out of control and has fanned out in several different directions. It's always seemed to me that directing research and treatments against inflammation/lesions/myelin loss/atrophy is harder and less effective than attacking the situation farther "upriver".
Admittedly, only time and higher numbers of participants will tell if the new treatments are attacking the problem far enough upriver but I (and I think you do too) find optomism in the fact that research and treatments are working in the right direction and from what little info has been released, the results seem very promising.
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