By definition, researchers are working on MS because we don't know answers to most all the stuff we come here to discuss. Period.
It's not as easy as polio was.
Those are obvious statements, yet we often put too much weight on what doctors tell us, what drug companies tell us and what trials tell us. Nobody knows.
We as consumers don't manage our own expectations. Here's what I mean. We grow up being taken to the doctor when we are sick. The doctor tells Mom and Dad what to do and we feel better. Doctors also fix broken bones and they miraculously know when we are not brushing our teeth. From childhood we grow to have an enormous respect for the intelligence of doctors.
Somewhere along the way you found out about Santa, the Tooth Fairy and later on you might have even realized that your Dad didn't know everything and wasn't as smart as you thought. But, many of us never adjusted our expectations of doctors.
if you're still with me, please just stick with this idea ...... since when did I become brief?
I'm an accountant. I do nonprofit organization accounting. EVERYONE expects me to know about income taxes. I don't know much about income taxes. I know about nonprofit organization accounting. Every year the same friends call me anyway with tax questions. This will start in about 3 months. Even with an annual disclaimer, folks think like maybe next year Ken will be a real accountant and know about income taxes.
Adjusting the expectations of others to reality is difficult. Even when it seems ...... Obvious.
The crowd here, I believe, is unique because we have taken the time and interest to come to a place like TIMS because we think there is more to know than what the doctor told us. Perhaps I'm a pesimist, but I feel that we are a small minority. I think the majority of folks take what the doctor says as golden, like Santa. I respect everyone here for wondering if there are other answers that we don't get from the neuro.
We can't fault the neuro. They are doing their jobs. The nonprofit I work for has lost A LOT of money in the stock market. I took a lot of my retirement plan out of mutual funds in September because I was uneasy about the climate. But, that did not mean that I, as the organization's accountant, could go to the boss and tell him we needed to change the corporate investment strategy. Why? Not my job description? Not my area of expertise? Not what I was hired to do? Not the way my role is defined? Would it be different if I was the copyroom guy instead of the accountant? Some of that or none of that, I'm just asking you to think about it. The stock market has been studied for decades, can't you tell me what it will do tomorrow yet?
My reasoning is that we cannot get bogged down in the game I call (say this to yourself with a deep smartass tone), "I Divest Myself Of Personal Responsibility For Me". Oh how human it is to play IDMOPRFM. I did what the doctor told me to do. I did what the lawyer told me to do. I did what the accountat told me to do. I seen it on TV, I did, I know it's true. Or my neighbor the genius he told me too. OMG, all you need in this country to have instant credibility is live next door to someone else!
My first point, it's all advice. Sometimes we pay for it, sometimes it's free. Sometimes it's right and sometimes it's wrong. Sometimes we get a bargain and sometimes it's costly, very costly. But, don't be playing IDMOPRFM because then you're running on luck and one day it will run bad. Bring your knowledge and common sense to the decisions you make and OWN THEM! If you're smart enough to be a TIMS member, I'm sure you know this and it's part of your life. I love this place for many reasons, one of them is the willingness to think that infects us all in such a positive way.
My second point, (you knew there was another one, right?) don't give up because you don't know. None of us know, but that don't keep us from trying. Know one wants to be called a quiter, but that also requires behavior that isn't easily confused with quitting. Think, read, try stuff, DISCERN, do the best you can for you and share your insights with us here. I think the original topic was about not pursuing any effort to help yourself feel better. That sounds like quitting to me. Ken