Everyone’s different

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Everyone’s different

Postby robbie » Mon Oct 06, 2008 6:01 am

Why does everyone respond different to all the drugs, from one extreme to the other? There is no common denominator we all try everything and occasionally we find something that helps weather its goats milk or vitamins or whatever, how is it possible that this happens?
Had ms for over 19 years now.
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Postby ssmme » Mon Oct 06, 2008 7:32 am

I wonder this same question myself and it brings me back to wondering why MS affects us all so very differently. I feel that my MS doesn't fit into any of the "categories" like RR, SP, PP. I can honestly say I hate this disease. Nothing good can come from it.

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Postby cheerleader » Mon Oct 06, 2008 9:30 am

Hey Rob-
You're good at asking the big picture questions. I wonder the same thing...why the variation in MS? I think it's just genetic and environmental differences and the location and amount of axonal damage.

I think MS starts alot sooner than we recognize it, and hits susceptible people sometime in childhood. It finally gets some attention once damage is done in the CNS. It's a chronic, debilitating disease and because of plasticity the brain is able to overcome some of the damage...until it can't anymore. Drugs, vitamins, goat's blood, whatever, can slow down the process, maybe help the body catch up.

Jeff had restless leg syndrome, depression, fatigue issues 20 years ago. We didn't even know about MS, and he never saw a doc for any of it. Now we're scrambling to put the brakes on this disease...Marcia's right- nothing good comes from this, except maybe helping each other through it.
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Lyon » Mon Oct 06, 2008 11:15 am

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Postby robbie » Mon Oct 06, 2008 11:47 am

Drugs, vitamins, goat's blood, whatever, can slow down the process

I wish I could truly believe that cheer I just don’t understand. I know we have to believe and I know there is no point to dwell on things but I just want to understand how all these different drugs can help us. Is allot of it just in our heads? Same as all the drug trials rely on the placebo to compare their results but with ms and how unpredictable it is how many of the people actually getting the drug have affects that come along of their ms and nothing more, this must have an affect on the results so if it's not 30% what is really after you subtract all the uncertainties . How can you compare someone on a drug to someone on a placebo when the disease is impossible to predict. When a drug company says their drug is say 30 % effective how much of that 30% is owed to the fact that that persons ms was going to be that way drug or no drug. That percentage is low enough but realistically some of it must have nothing to do with the drug, so those results must be honestly even lower.
Had ms for over 19 years now.
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Postby Loobie » Mon Oct 06, 2008 2:01 pm

I agree with what you are saying Bob if it means this: the disease process whereby placques are 'created' has pretty much the same drivers. But since it's in our brain, which we really know less about than we are purported to use (you know the old we only use 10% thing) it takes so many different 'forms'. So I think that the manifestation is where it is drastically different. I have a local MS buddy who is in a wheelchair. However, he has no issues whatsoever with his bladder and bowels. He says that has never been affected. He is also never dizzy and rarely gets headaches. My dizziness and bladder and bowels are my most debilitating symptoms. I can get around, albeit slowly, and he just wants to walk. How the hell does that happen? I mean we both have MS?. I hear and relate to all of this talk. I really hate this Godforsaken disease. Like me and Robbie have said in the past, "either take me or piss off". Like the Neal Cavuto quote about his cancer being easier to handle than his MS. He said "there is no endgame here, at least with cancer it was either we get over it, or we go down". This son of a bitch steals your quality of life but leaves you around to watch.
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Postby Lyon » Mon Oct 06, 2008 2:16 pm

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Postby cheerleader » Mon Oct 06, 2008 3:30 pm

It's where the lesions and axonal loss are, Lew. Location, location, location.
Jeff's lesions are mostly in the corpus callosum part of his brain...this area affects fatigue, mood and depression. He has one on his cervical spine that creates leg pain and bladder issues. The areas of the CNS that get hit and break down are different in everyone. Optic nerves, spine, brain-everyone's MS attacks different places...but, as Bob says, the method of destruction is still the same. If only we knew what that method was...
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby robbie » Tue Oct 07, 2008 5:36 am

I wish I could truly believe that cheer I just don’t understand. I know we have to believe and I know there is no point to dwell on things but I just want to understand how all these different drugs can help us. Is allot of it just in our heads? Same as all the drug trials rely on the placebo to compare their results but with ms and how unpredictable it is how many of the people actually getting the drug have affects that come along of their ms and nothing more, this must have an affect on the results so if it's not 30% what is really after you subtract all the uncertainties . How can you compare someone on a drug to someone on a placebo when the disease is impossible to predict. When a drug company says their drug is say 30 % effective how much of that 30% is owed to the fact that that persons ms was going to be that way drug or no drug. That percentage is low enough but realistically some of it must have nothing to do with the drug, so those results must be honestly even lower.

what do you think of what i said bob am i just thinking stupid or no, everyone listens to you.
Had ms for over 19 years now.
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