I agree 100% with everything you just said! I no longer get excited when a new article or publication talks about "new research" because it seems to all be researching stuff that's been researched a hundred times before. Or they make a huge "announcement" that it's been determined that people with MS have pain. DUH! Tell me something I don't know.

I don't feel there will be a "cure" in our lifetime! Look at the $ that the big ppl would lose. How many years have "they" been working on a cure for cancer? Nah, I don't take their 33% chance of helping meds. I'll be with ya in Washington Sal!

You know what I hate most of all?

That the neuros, pharmas, etc. don't take what we bring to the table seriously...we have a base of knowledge too...don't talk down to us, don't tell us we don't know what we're talking about. We are some very sharp tools in the shed, you know...so don't dismiss our input.

Now ladies, how can we be so greedy in wanting a cure for us and
others.
We would be taking away the life style of all the big corps., pharms.
and anyone else that might be involved to help us to have a normal life.

We would be taking away theirlarge mansions, luxury cars,boats,
world trips,personal service and whatever comes in that world. Now why
should they worry about us poor people that are suffering with this disease
and the many more diseases that people are suffering and dying from.

The money that is made from all kinds of fund raises all go into their
pockets not much into research.

This is what I believe and feel.

Jappy

MS was the only thing I got, that I wanted to give back so badly. All of it for 30 long years.

Why, because after 150 years they still treat people with all the wrong drugs. They rather give us toxins and get rid of us, imo. They all should stick a needle up....

Even the common cold, cancer, AD, ALS, PD, MD, CF, and tons more, where are all the medical geniuses? We live in a futuristic world, we've been to space and back, but still the big drug guys want all our money for their own pockets.

Just look at any drug store shelf. With the OTC drugs, and the prescription ones, what a fortune is made every nano second.

I can agree some drugs are life saving for some ailments, but so many diseases are out there. (sigh)

Sally, good thread to vent. Thanks!

We all seem to have computer access. On line getting e-mail addresses of goverment reps, etc. is fairly easy. I have sent e-mails to each. Found sending to president generates a general form reply, but sent anyway.


A new anti-miscarriage drug (a progesterone) that has gone from $10 to $1500!!!! by new Pharma Co. owner (no, they did not do research and don't need to cover cost - Makera (?) from Thera-RX). Ten doses are usually needed and is beyond reach of most without insurance. Their babies seem doomed to die. I asked in my e-mail if their own mothers knew what they were doing to others. I generated a form letter reply. My next e-mail expressed the old Wendy/old lady line "I don't think there's anyone back there". Of course I got no reply but if I made one person think for one moment maybe that's as good as it gets. It did help amuse me for the day Maybe one day you'll see me on TV chaining my wheelchair to White House fence.

Sally, I've been to FDA (pre-MS) when I worked for Medical Export/Import. Not impressed, suggest going to Capitol or White House.

This new pill Gilena is $48,000 Per Year! its a pill that costs very little to make, but they are charging the "reasearch value" of this med. its insane! Now we are told to eat aprin everyday instead of green leafy vegetable. statins instead of oatmeal and fish, and boniva instead of calcium rich foods. I say we take our pharmacutical needs to the garden, instead of the drug store.

When I was "misdiagnosed" with SPMS and taking Avonex for over 2 years, my research led me to believe they (pharma and neuros) really didn't know if it would do any good.

I quit taking it saving me ruining my weekends with the flu symptoms side effects, not to mention having an intramuscular shot on Friday nights. Besides, they were charging my insurance company $3,500 a month for the med. A med nobody knew or knows would or is going to work. You tell me any one has patients in mind for any cure anytime soon?

Why do you think the drug companies are desperately trying to shove CCSVI under the rug?

They are scared silly that this may be the answer that puts them out of business!

I firmly believe from all of my research dealing with MS and my current diagnoses the answer is with allowing full scale stem cell research and immediate application. I would be the first in line simply based upon what I've read already.