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 Post subject: Relapse/Remission/Why?
PostPosted: Tue Nov 28, 2006 8:22 pm 
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Last edited by Lyon on Mon Jun 20, 2011 2:58 pm, edited 1 time in total.

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PostPosted: Wed Nov 29, 2006 7:14 am 
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All I can say is that EVERY relapse my daughter has had was directly related to a highly stressful situation. I have an incurable, no treatment disease--intersistial cystitis. I have had 2 severe bouts, each preceded by a severe diet change. I successfully treat this problem with diet change and supplements.


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PostPosted: Wed Nov 29, 2006 11:06 am 
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The "remission" side is a bit of a misnomer as the disease process is continuing even in times of so-called remission. This is according to MRI scan research. It is in reality a progressive disease throughout even for those called "relapsing remitting".


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PostPosted: Wed Nov 29, 2006 11:49 am 
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You are right gibbledygook, this disease is not RR is progressive, even when you can’t feel any the clinical process, the problem is going on in the brain (the real problem).


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PostPosted: Wed Nov 29, 2006 3:40 pm 
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Last edited by Lyon on Mon Jun 20, 2011 2:58 pm, edited 1 time in total.

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PostPosted: Wed Nov 29, 2006 7:48 pm 
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There was a very interesting presentation by some prominent doctor on this very subject. Cannot remember where I read it? He showed 2 patients--one who had had numerous relapses and NO new lesions; one who had had no relapses and lots of lesions. That's the misnomer with the CRAB drugs...they to NOT stop disability! Just supposedly reduce relapse rate. But how do you judge that when there is no relapse pattern to this disease?


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PostPosted: Wed Nov 29, 2006 8:14 pm 
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Last edited by Lyon on Mon Jun 20, 2011 2:58 pm, edited 1 time in total.

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PostPosted: Thu Nov 30, 2006 1:25 am 
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Its like an ice berg the tip sticking out of the water is our relapses and the gigantic titanic sinking bulk under the water is the ongoing disease process. I saw that illustration in a magazine recently.

Rick


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 Post subject:
PostPosted: Thu Nov 30, 2006 6:54 am 
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I don't believe anyone is looking for a cure...or a cause. Treatment is where the money is and I actually understand that.


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PostPosted: Thu Nov 30, 2006 5:57 pm 
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Last edited by Lyon on Mon Jun 20, 2011 2:57 pm, edited 1 time in total.

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 Post subject:
PostPosted: Fri Dec 01, 2006 6:43 am 
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Location: Naples, FL
If you haven't looked into what Accelerated Cure Project for Multiple Sclerosis is doing, you should. They are definitely looking for a cure and determining its causes. I hold a lot of hope in what they are doing and fully support them and hope others do also. They have facilitated research, set up MS repositories in major institutions and developed a "Cure Map". If you aren't familiar with their work then check them out at www.accleratedcure.org. I know many members of this site are familiar with their work but perhaps many others are not. I believe they are on the right track and are doing a lot of positive things. Art Mellor has dedicated his life to this.

Lori


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PostPosted: Fri Dec 01, 2006 6:47 pm 
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Last edited by Lyon on Mon Jun 20, 2011 2:57 pm, edited 1 time in total.

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 Post subject:
PostPosted: Sat Dec 02, 2006 7:43 am 
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Bob
When I was first diagnosed 4 1/2 years ago I, like I'm sure everyone else, researched as much as I could on the web. Came up with some good sites and some not so good sites. Accelerated Cure (then known as Boston Cure) was the one site that gave me good,valid research without scaring me to death! That is how I felt about them then. My husband and I have gotten to know Art Mellor very well and understand Accelerated Cure's mission. We have a lot of hope in the organization. I hope as you look into it you see the same positives that I do. The repositories that have been set up is a really big deal. They have relationships with Johns Hopkins and Beth Israel Deaconess in Boston for example. So they are serious. That's one of the many reasons I feel so good about them. Let me know what you think once you check them out.
Lori


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PostPosted: Sat Dec 02, 2006 12:33 pm 
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Last edited by Lyon on Mon Jun 20, 2011 2:57 pm, edited 1 time in total.

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 Post subject:
PostPosted: Sat Dec 02, 2006 2:55 pm 
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Hi Bob,
What is it specifically you are looking for?

Lori


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