Re: Re: Donna and Ampyra.....

[Guest guest]

Dee,

I think a whole bunch of that "we don't know exactly how it

works" is something required by the FDA. Probably because they

didn't write it up as "part of the study" or some such

technicality. I can't remember what it was exactly, that I

experienced with the Copaxone, that when talking to the nurse at

Shared Solutions.. I think it was the fact that I was pretty

sure that I "felt" the stuff working, the first night.. When I

asked her why it wasn't included in the literature about the

Copaxone she told me that it had been at one point, but the FDA

made them take it out because it wasn't within the "scope" of

the original studies. And she told me that mine was the first

report, she'd heard, of "feeling" the difference the first

night, and that it was usually about two weeks being the first

report of people "feeling" different. She also added that

sometimes it could be months down the road before people

"noticed" a difference.. But they still couldn't use the

"anecdotal" information as part of their literature.

So I suppose that the experts have an idea of "how" something

works, but because they can't prove it definitively they have to

say that they don't know exactly how it works. Have you ever

tried to read and make sense of a government agency document? I

know I have a hard time understanding that stuff!

I have my own theory of why Copaxone works the way it does.. I

think that we are injecting something similar to myelin under

our skin, and the MonSter mistakes it for the "real stuff" and

goes after the injection site stuff instead of the "real

stuff".. But that's my take on the situation. Sort of like

endorphins being released into our body to combat pain. I know

that when 's feet are hurting him badly (he worked on wet

cold concrete as a butcher for over 20 years), I just torture

the heck out of the bottom of his feet.. stretching, deep

massage, causing him to yelp in pain.. BUT when I'm finished,

the endorphins have been released and are rushing to the spots

where I inflicted pain.. and within 10 or so minutes, he has

relief from his aching feet...

But really, who'd have woke up one morning and said to

themselves.. "Let's try bird poison on people with MS to see if

it makes something better for them!".. I kind of understand the

putting together anti-seizure medications to stop nerve pain and

spasms and those types of things.. Though I guess that's why I'm

not a research scientist.. I don't have the imagination to wake

up one morning and say to myself.. HEY.. here's an idea!!!

<grin>

I love Bill Engval!! and Jeff ain't no slouch either!

HUGS

|)onna

Looked up Ampyra, also never heard of this.

Isn't if strange how we are prescribed things that the experts

"don't know how it works" is part of the descriptive

information... I read that even about copaxone and it's not

that new. so strange. surely they have an idea of how

something works in order to manufacture it~ sounds like one of

bill engval's "here's your sign" situations.

[Guest guest]

that is very funny Donna, canx each other out indeed!Dee