I come here after years of going primarily to other forums (porphyria and Polycythemia Vera) because I learn more about the nervous systems and its affects, and what helps it, here. Although some of my neural symptoms could be from Porphyria, some could be from my initial DX, Multiple Sclerosis. Doctors cannot separate out this stuff. They depend on me to even start doing it. So if I don't know anything...pfttt! I have never met a doctor who understand both MS and Porphyria--there undoubtedly are some but rare. I may have met a neuro at Mayo who did understand both, but of course I saw him but once as an adjunct to my PV workup. I would have to live in Scottsdale to have constant recourse to him. And he would not be doing anything to help my MS (I think) because I can't take any of the MS drugs. So if I know at all what I am doing, it has to be on my own, which is usually on the internet.
I feel there must be others here with multiple diseases or odd manifestations of diseases and odd combos who MUST rely on their own perceptions. In the case of my third disease, Polycythemia Vera, I would never have known about p32, the drug which knocked down my platelets when I couldn't take chemo for that, if I had not been on an internet forum. No one in any state I have lived or in Maryland where I went to Hopkins knew anything at all about it, except one very old cardiologist who had seen it used long ago when it was more common. I had to ask her about it--in other words, I had to instigate the discussion. Now everyone is happy that I had this and intend to use it more often....but without the internet this would not have happened.