[chiefmarilyn]

I read about this website in the latest Neurology Now magazine so I have been reading posts this a.m. I have Trigeminal Neuralgia(dx 1996)and MS (dx 1994 after 10 years of wondering). I'm fortunate that drugs, lots of drugs, keep me going and functional?. I used to walk in the MS Walk, but now I volunteer in the kitchen. Legs don't want to work after a mile or so--I think largely because body temp is too high. I'm happy to find a site to hear about other people's experiences. Thanks for sharing.

[Curious]

Attachment 1009 to NeuroTalk chiefmarilyn.

[Darlene]

chiefmarilyn,

Welcome to NeuroTalk message board.

Darlene

[Nancy D Stephens]

Hi Chiefmarilyn. I developed tgn in both lower jaws in 1988 but left side was worse. Had lots of other wacky symptoms the specialists did not want to hear about. See my new member post of today for details. Now I have lots of neuro problems but the 'burning tgnpain' has been decreased by 90% on coumadin. My anti-myelin antibodies are also double normal so I sure part of mine is due to demyelinization. I have strange sutoantibodies attacking everything they can find. At least I am not on Oxygen 24/7 now due to chemo used to attack the antibodies. You might want to check to see if any of your tgn may be aggravated by clotting disorders--I know mine is. I still have the electric shocks in both left and right lower jaw but at least is is not a constant fire burning in my left lower jaw. And I don't have the shocks every day--weekly and not to a huge degree. Let me know if I can be of help. Found this website in Neurology Now also. I am a former registered dietitian for the VA medical center. Retired on disability in 12/92 at age of 42. Broke my heart. nancydstephens@yahoo.com I don't exactly know how to retrieve responses but I guess I'll figure it out. I don't know how to instant message either. nancy