Not just the neuro ones. I post on MS.
I also have Porphyria and two rare myeloproliferative diseases, Polycythemia Vera and Monoclonal Gammopathy.
You might add Myeloproliferative diseases. I already post on three MPD forums, so I don't need it for myself, but others might.
The second one, Myoclonal Gammopathy is still a mystery to me, and not many have it on my MPD forums, so I might post there.
My MS MAY be Porphyria all along, or I may have both, No way to tell, 50% of docs said I had MS and 50% said not. They are totally confused by me. I can't take the chemo I need for my Polycythemia Vera and it's a crisis but I'm trusting God.
I am not asking you to set up the POrphyria forum as it was a big mistake with the fighting. I go to a very very good Porphyria forum where we know more than most doctors and it is amazing what goes on there. It is such a shame doctors don't read our stuff. And we never fight.
Thanks, the forum looks very lovely now. I'm glad I can use the smilies, I would love to use big pictures like roses as Abby does, but I don't know how! Mariel