Says it all

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Says it all

Postby bromley » Wed Nov 30, 2005 1:03 pm

I saw an article about the benefits of turkey (or the chemical in turkey which helps reduce inflammation). The following message was posted under the article and pretty much says it all about the current state of decent MS treatments.


Gerry McCready Nov, 23 2005
As a long time MS sufferer, one half of me gets excited when I read of new developments like this. However, I find it discouraging to think I have waited all through my 30's, 40's and 50's for some really good breakthrough to happen. To no avail. I don't consider the five copy cat MS drugs to be a big gain. I do consider them to be a great $$$ stopgap measure. Now I am 65 and the hope that I will ever walk again (or get back other functions I have lost) is FADING FAST. It would be nice to hear a scientist relate to the many people with disabilities and tell us when they feel there will be good news that we may IMPROVE rather than just stall relapses. The feeling many of us have is that we just exist to continue buying drugs to support the pharmaceutical companies....and no one really seems to care whether we ever make headway in reversing our disabilities. After all these years and billions of dollars paid to thousands of researchers, surely someone, somewhere has some enlightened thinking on how we can fast track the remyelination process and thereby reverse even some of the damage that has been done. In business, the problem(s)are clearly defined and appropriate strategies and tactics are used to solve the problem. The people given the task of solving the problem are held ACCOUNTABLE for the solution! Perform or you're gone. I don't see this level of accoutability being applied in the medical field. I do see researchers being applauded for inconsequential micro-gains in obscure fields that have little or no true benefit for MS patients. Please, please get with the program. We need to achieve things that will help patients NOW. Thanks, Gerry McCready, Kingston, Canada.
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Postby REDHAIRANDTEMPER » Wed Nov 30, 2005 2:18 pm

what a wonderful letter..you are right it says it all..he makes some great points in there about making someone accountably for the ations that arent happening...i mean are not happening in any stage...they need to make sure these doctors aren't so timid about the ms dx..i mean if everything the patient is telling is ms related but nothing shows up on anything u have done..however their symtoms don't get better..so what to they do..nothing just wait and see..when they could give you medication to see if that helps to improve your symptoms...nope u have to wait until they find something....okay are they gunshy of the dx that much or is it cause of the insurance companys that they are that way....it drives me crazy..i know most want to try and help but not doing anything isn't the way to help...all it does is make the pt lose hope..make them frustrated...and makes them stop believing in their dr...
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Postby raven » Thu Dec 01, 2005 4:21 am

Doctors are very right to be timid about an MS dx. MS is not the only neurological condition out there, there are many others some of which have probably yet to be described or classified. I suspect that there are many who have been given a probable MS diagnosis who do not have MS at all.

I have a very close friend who has been told she has MS since her early 20s but a firm diagnosis has never been given. Recently, in an attempt to get a definitive answer she went through the MRI / Lumbar puncture routine again. All tests came back clear. What would you have the neuro do? Tell her she has MS anyway despite the lack of evidence or come clean and tell her that there is a problem but at the moment he just doesn't know what it is. In her case they have run out of tests, it is likely that she will never get an answer.

I feel terribly sorry for her but at the same time agree completely with the position that the neuro has taken. Until you know what you're dealing with how can you sanction the taking of potentially harmful medications? For example I read that one of the PML cases from the Tysabri trial probably didn't have MS at all. In effect this person died taking a medication for a disease that they didn't have!

As far as the letter from Mr McReady that Ian posted goes things are happening. There are treatments where people are recovering from MS, I'm one of them. Yes, they are still in trial and things are progressing slowly but that is the way that things must be done to avoid repetitions of the Tysabri debacle. In the UK next year 10 patients will undergo stem cell treatment to attempt to repair spinal cord injury damage. These things will go from strength to strength.

When I was diagnosed 6 years ago there were no treatments, you couldn't even get the interferons unless you paid for them yourself. Now hardly a day goes by without another drug trial being announced. The Boston cure project has just announced its first major milestone (congratulations Art). The future of stem cells is looking increasingly bright. We would all like a cure to be announced tomorrow but in leiu of that, comfort can be taken from the accelerating pace of discoveries.

Robin.
Do not go gentle into that good night. Rage, rage against the dying of the light.
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Postby bromley » Thu Dec 01, 2005 5:54 am

Robin,

I have to agree with you about the future - things are moving in the right direction. It's the waiting that is difficult - particularly given the damage which is going on. We are in a bit of a limbo at the moment - current licenced drugs have limited efficacy and the manufacturers are happy to hang on to them. Better drugs are in the pipeline (which deal with inflammation) and neuro-protective drugs are coming. For those with significant damage - stem cell treatments and therapies to regenerate damaged areas will come.

Everytime I read an article on cancer, they talk about cancer becoming a chronic illness (not a killer) in the next ten years. One can only hope that neurological diseases are the next to be conquered or tamed.

I think you make an interesting point about other neurological diseases. I really believe that MS will turn out to be several diseases with different mechanisms driving the different variants. Or perhaps it will be different viruses or different variants of the same virus which are responsible for the different courses of this disease. The answers are coming - they just seem to be taking a long time.

Good to hear you are still doing well.

Ian
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Postby REDHAIRANDTEMPER » Thu Dec 01, 2005 9:53 am

sorry if i came across ugly or anything like that...you have good points.i guess i am just in the i am frustrated state with everything am sure will be better as time goes by....

chris
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Postby raven » Thu Dec 01, 2005 10:05 am

Chris, you didn't come across ugly or anything like it. Everyone whether diagnosed or not has a boat load of cr*p to deal with.

We all get frustrated and vent sometimes.. Yes even me! ;)

Don't let the cr*p grind you down.

Best wishes

Robin.
Do not go gentle into that good night. Rage, rage against the dying of the light.
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Postby REDHAIRANDTEMPER » Thu Dec 01, 2005 10:18 am

thanks there robin.i guess i was in a mood yesturday...i feel a little better now..i was having a hard time walking yesturday more then normal..i guess i let it get to me...but thanks..it helps to vent once and a while...

chris
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Postby amelia » Thu Dec 01, 2005 12:47 pm

On DR dx's, Gary went nearly 15 years without a definite dx. Go to one DR, yes you have it, then in 2 more visits he'd say no you don't have it. This went on until one DR finally told Gary about Clinical MS. His words, if it walks like a duck, talks like a duck, then it must be a duck. Turns out he was right. Sometimes the "test" don't confirm MS as much as it rules out everything else.
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