FACEBOOK CHAT: “Rare Neuropathies: Getting Diagnosed, Getting Help”
WHEN: September 17, 2014 (7-8:30 p.m. EST)
– Jeff Levenson (Adult Polyglucosan Body Disease Foundation)
– Jack Johnson (Fabry Support & Information Group)
– Courtney Hollett and Lori Sames (Hereditary Neuropathy Foundation)
– Dr. Jinny Tavee (Cleveland Clinic Lerner College of Medicine)
– Dr. Edwin Kolodny (NYU)
Of the over 100+ different types of neuropathies impacting millions in the U.S. alone, there are several inherited neuropathies that are considered “ultra-rare.” If you have a ultra rare form of CMT or related neuropathy this discussion could be for you.
I have C M T I live in a small town in Tenn, Dr. don’t know much about this my mom had it in my family some have it some don’t Dr, tells me there is nothing to help with C M T.I need a good dr. can anyone help.
My hands are shaking so bad all the time now everyone that is around me notices. Is that common? The nerves and muscles are already damaged. I fall a lot but mainly in the morning or when I over do it.
I have Charcot Marie tooth disease