This struck me as inhumane:www.thisisms.com/ftopict-15887.html
good discussion, willowford, you have a different perspective on this because of your background, it's refreshing even if I don't agree on everything.
Do you see it as at all ironic if I find benefit in what you shared about provigil here on a forum and use that info to help in my decision-making process? While you are meanwhile seeming to be cautioning us about the use of forum-gained knowledge in our decisions?
I am actually a strong proponent of forums (member of many for other condition I myself have suffered from) - forums provide a sense of community, give hope, and helps us learn more about what we're experiencing. Where I start to get concerned (probably related to the fact that I have learned through training that the way the body works is WAY more complicated than the way most patients depict things) is when patients come to forums for medical advice from other patients - without consulting doctors who have spent years studying a particular topic and know the complexities. Some say, docs don't know everything. And that is true! BUT what little they know about the body (depending on their specialty of course) is FAR more than we can appreciate by spending even a few hours a day researching and googling. They spend years, FULL-TIME (most patients don't have that much time) and they also learn from other experts and get exposure to MANY patients throughout their training. They also learn how to interpret what they read so they are not mislead (my area). This is not true of the knowledge we can get as patients. It truly concerns me that patients rely on other people who they have never met to determine what drug/herb/procedure they are going to expose their body to. Knowledge is important and it gives us power, but if we don't know which knowledge is reliable and all the other aspects that posters don't take into consideration, we are prone to decisions that cause harm rather than good.
For example, on another thread there is a fascinating discussion of neurons, hypoglycemia and MS - some went even further to say that metformin can be considered as a POTENTIAL therapy (pending investigation of course). Then other patients, desperate for any solution, were posting things that suggested that they were ready to begin taking metformin now for MS! This is a problem because while the posts are fascinating (I love the complexity of the body), people don't seem to be aware that the threads are meant for discussion and learning, NOT to pose medical advice without any trials or evidence yet on the topic. If someone begins to take their diabetic family member's pills on their own because their doc is certainly not going to prescribe something without any evidence (not allowed to), that person doesn't realize that he/she has not been screened for the absolute and relative contraindications of metformin or other anti-hyperglycemic agents (docs must screen for these before prescribing). As patients, we just can't know how something acts on various organs in the body. It's not just what it does to the brain cells. Drugs can act on other organs and if there are certain contraindications that patients are not aware of, then they can add organ damage or other adverse effects to their MS as well.
You say you don't agree with what I say - when in fact, all I'm saying is patients have the right to make choices about their bodies - and it is patients' right to get facts, not just stories, in their decision making. It is docs' responsibility to give them the facts and show them resources where accurate facts can be found. I know some patients ignore the importance of factual evidence, and that some docs don't even bother providing this info all together. In the end, it is the patients' health that suffers as a result of both of these approaches.
If I ate a bucket of salt a day and felt better (I'm severely hypotensive and doc asked me to increase salt and water intake), and I go on a forum and tell everyone that this improved my life, my guess is that there may be someone out there who misinterprets my experience as evidence for the benefit of salt on lightheadedness of any cause. They would then do what I did, except, because their health/medical history is different than mine, they may become hypertensive (or exacerbate their hypertension) and have a stroke, heart attack, kidney damage, etc. I would never know this happened based on my post. But even not knowing, I don't think I can live with myself knowing there is a chance.
There is no doubt that patients must obtain knowledge and make choices based on these. But do you think that there is a line that needs to be not crossed by patients in terms of giving each other medical advice without knowing the other patient's medical/personal condition/history and without complete knowledge of the entire body not just related to MS? If so, where do you think that line is?