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AS long as the drug companies can continue to make (lots) of money, it is possible they could come out with a drug that stops the disease but requires lifelong use. Not being negative, just have read lots on this subject and realized "it's all about the money".

I don't quite know how to say this.

I think money matters somewhat.
I think the scientific method matters somewhat.
I think insurance liability matters somewhat.
I think health insurance matters somewhat.

I think we begin with a very idealistic thought that medicine and doctors are here to do all they can to help eliminate disease. Not to rain on anyone's parade, but idealism and fine print don't mesh up so good together.

The Doctor in Mayberry that made house calls don't exist no more.

I think we now live in a time and place where a number of factors will limit the breadth of options OTHERS will present to us. Options are restricted as to what the insurance will pay for, what malpractice will allow, what science has proven, what the FDA has approved. These are the limits imposed by others.

BUT

If you want to be assertive and apply yourself to your concern, instead of assuming that the doctor will show up with the solution - you can open up a world of options that doesn't otherwise exist for the patiently passive.

If you wanna be patient, then be so.

But, no one will advocate for you better than YOU! So being here at TIMS is a great step, you are here because you care and you don't think your doctor is the end all of medical knowledge. I'm not saying you have to do it yourself, but you do have to put yourself in charge and not wait for others to act. YOU CANNOT DELEGATE RESPONSIBILITY FOR YOUR HEALTH. So, you say "Yeah, I get it". But, then you'll say, I'm waiting to hear back. I'm waiting for the test. I'm waiting for an approval, the results, or the trial. Get your mind out of the habit of delegating and permitting delay because you've made it someone else's job. It's not their job, call them and follow up, make it happen. Don't wait. Be in charge.

So you say, "That's nice Ken, but I can't just run out and cure MS overnight." I hear you, but please keep it down because, folks like Cheerleader, Marie, Sarah and Kim haven't quite caught on to that sort of thinking just yet. Ken

NotAsPerfectAsYou,

Thanks. Extremely well-said.

Wesley

Ken -

you wrote

I'm not saying you have to do it yourself, but you do have to put yourself in charge and not wait for others to act. YOU CANNOT DELEGATE RESPONSIBILITY FOR YOUR HEALTH.

You are so right!! I learned this lesson the hard way as I watched my husband being treated for multiple issues related to cancer; and, as I cared for my mother in her later stages of life. Even though I was fully aware that I needed to question, I needed to understand what the doctors were prescribing and why (in fact I was a PIA and the doctors told me so), sometimes you are so tired and so confused that you want someone else to BE IN CHARGE. From my personal experience, never, never let up your guard to the doctors or the nurses or the technicians. They make mistakes and those mistakes can cost one's life.

I keep copies of all my records - every test, every office visit. I want to know what the doctor is writing down in my file but probably has not told me. I have copies of all my MRI's - all the reports - everything!! My neuro says that I am the best advocate for my healthcare that he has as a patient - I take that as a compliment.

And, as I get ready for my trip to Stanford, I am not planning on being cured of MS - but, I do believe that if I have stenosis in the IJV or the VV, and that if I choose to be treated, I will have a better chance of no further progression than any other treatment that is on the horizon or is being used currently. I have done my research (thanks to the help of Marie, and Cheer, and others) - for me, this makes sense. Yes, I will have a ton of questions for Dr. Dake - I will be proactive.

Ken - I hope your post "stirs the pot" so to speak - I hope it gets people involved in their health. Great post!
Sharon

A cure - no. I think they will be able to manage the disease, to halt progression and even reverse damage.

I think they will eventually figure out how to prevent it. But I don't think enough research is currently going into finding out what the disease actually is, which would be required to develop a cure.

I can't believe that anyone could live for more than a few years without this disease and have to learn the hard way that our health management is up to the patient and only the patient.

Even if I didn't want to be the coordinator, I've been forced into situations where I had to, or receive no care at all. For example right now, I am seeing spots, and neither my OB or the MS clinic is interested in helping. So I've had to call around to all my docs to try to find an opthamologist who will take me on short notice.

But perhaps it's just natural to me to take over becayse of my personality, and there are many people out there who are content to just sit on a problem and wait to be saved?

Chris55 wrote:AS long as the drug companies can continue to make (lots) of money, it is possible they could come out with a drug that stops the disease but requires lifelong use. Not being negative, just have read lots on this subject and realized "it's all about the money".

While the drug companies are certainly out to make a buck I think that this theory is a little on the black helicopter conspiracy side of things. I do not believe that a cure would not be released to the public just to make the gravy train keep coming. Even if a cure was found and the company tried to deep six it - someone would release it covertly and the company who produced the 'cure" would at least make a ton of $$ in the short term.

In Canada, a lot of government money is spent on disability... I would imagine more than the kickbacks they get from drug companies.

Grumpster wrote:

Chris55 wrote:AS long as the drug companies can continue to make (lots) of money, it is possible they could come out with a drug that stops the disease but requires lifelong use. Not being negative, just have read lots on this subject and realized "it's all about the money".

While the drug companies are certainly out to make a buck I think that this theory is a little on the black helicopter conspiracy side of things. I do not believe that a cure would not be released to the public just to make the gravy train keep coming. Even if a cure was found and the company tried to deep six it - someone would release it covertly and the company who produced the 'cure" would at least make a ton of $$ in the short term.

I don´t think it´s on the black helicopter conspiracy side of things at all. As long as the primary motivation for research in multiple sclerosis is profit we won´t have to worry about whether a cure will be released to the public or not because there will never be a cure. We end up with pseudo-cures, false hope and a billion ways to "cope" while the investors are getting filthy rich.