Am I alone in thinking...

[renee]

I'd be very happy to know that no one would have to go through
what i have gone through because of MS.

[Abby2006]

Welcome to the board

Abby

I rented this many years ago but no one was ready to hear it now I see the lightbulbs coming on~

[Gabriella7]

NMSS Momentum

All one has to do is open their magazine and see who is providing advertising dollars! Why would they want to give up their cash cow?

Gabriella

[Kittianne54]

Also, I am ppms, and there is nothing approved for ppms, because there is no money to be made in ppms research! Everything is for rrms or secondary- that's where the big money is.

[lunarrays]

"There doesnt seem to be as much emphasis in curing MS as there is creating high priced drugs to moderate the disease or alleviate the symptoms."

you said it! it's obvious that there is little effort at finding a cure, there is NO money to be made in cures. i personally don't even care about a cure anymore, i just want to improve my quality of life. i have tried and tried to get doctors to understand MY condition, my personal MS. they always tell you that MS is "individual", yet they lump us all together in the MS bucket when it comes to treating the condition. if doctors would try and figure out our personal MS they may be able to put together a personal treatment that can actually help us live a better life. too frustrating and too sad.

[stillstANNding]

Welcome to BT, lunarrays. See you around the board.
ANN

[Moonwolf]

Who knows?

There doesnt seem to be as much emphasis in curing MS as there is creating high priced drugs to moderate the disease or alleviate the symptoms. After all, the gravy train is over if a cure is found.

I had the most horrible exacerbations before any of the newer drugs were made. I was given prednisone, in the hopes that the damage would be minimised. I went up and down and had about 15 years of misery, but then the vicious exacerbations stopped, and I was mostly left with residual damage and quite mild exacerbations. When the new drugs came out, I was extremely skeptical. With MS being as capricious as it is, I thought it would take at least 20 years of long term studies with a huge number of people, before anyone could be sure that these new drugs were actually cutting down on the frequency and severity of exacerbations.

I know several people who like me are older than Methusaleh and we've had the same experience. Unfortunately, we also know people who had an unrelenting course of MS and died. It's almost impossible, IMO, to be sure of anything.

[joshremus]

Just because I'm paranoid it doesn't mean they're not out to get me...
What I sometimes wonder, when I'm really down and out, is maybe they already have the cure for all of these neurological diseases and they've already smothered it.
Probably not, but I never underestimate others' greed.

[Virginia]

Somehow, and of course I am not sure, but I believe that if they really did have the cure and tried to smother it, it would have leaked out. I think it would be so big that it could not be contained. But then, I could be wrong.

[Abby2006]

There is no money ro be made in healthy people so why would they create a cure? It would end their dreamworld

Abby

[Gabriella7]

Osler's Web

Has anyone read Osler's Web authored by Hillary Johnson? If you haven't you should go check it out and read it.....It is based on true accounts of multiple patients struck down in the prime of life by a new virus..... including a cluster of 37 cases of multiple sclerosis in Key West in the early 1980's.

Gabriella

[agate]

One problem with finding a cure is that central nervous system damage is generally assumed to be beyond repair. By the time a person is diagnosed with MS, that damage has probably already been done. All you can do is try to prevent the process from continuing.

Remyelination might be a ray of hope, though. They're working on it.

[SalpalSally]

Yes Agate, Remyelination is probably my only hope now. I haven't heard
too much from the Remyelination Foundation lately. Thought maybe that
they gave up on us? We need meds to stop the demyelination and to start
the remyelination.

[Virginia]

Sally, you just said it all in that statement!!! Why can't the bit pharma companies work toward that end, and I mean seriously work, then maybe we would not complain so much about their money.

[agate]

You don't hear much about it but the Myelin Repair Foundation seems to be still functioning:
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In fact, they announced a collaboration with Biogen some months ago:

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