United Brachial Plexus Network, Inc.

Unfortunately the BPI picnic in florida is postponed until March 5 and 6th of next year. Leslie McKibben

you sound like you've really been there, I appreciate your response.I think the only reason I'm still here sometimes is 'cuz I just get too sick and tired to go to the trouble of ending it.Plus I can't let "them" win.....gotta soldier on-ect.I WILL beat this or at least reach a cease-fire- I know there's no cure, but there has to be a better way than this. I got no problems with having to depend on a med for the rest of my life....it's just getting down to as little as possible...it's not about a cure, it's not about coping, it's about looking back at yesterday or last week and saying "I had a good time" not "Crap I was hurting like h### and just couldn't make it" or thinking that I'd like to do so & so next week-end- but I may be in too bad a shape. I don't want to have to plan everything around how much meds I got left, can I afford to skip Tuesday or put off fixing my bike cuz I'm too sore to move....A little more active sex life wouldn't hurt either.....this is getting long-I'm out.

I hear you all on the pain issue...I have a gigantic tumor compressing my brachial plexus, and at times I have thought if I was an animal, everyone would do the humane thing and just shoot me.

Sitting against anything, or lying down for any length of time causes the pain to be completely unbearable, so I get very little sleep, and that makes everything harder to deal with and to function in the daytime. No matter what I take, even morphine, doesn't take it away completely, and even if it lets me fall asleeep, I wake up in 1 to 2 hrs in agony.

However, I have started to hear of a drug called Neurotin, or something like that, that is supposed to be just for nerve pain. Has anyone heard of, and how are results, etc? Maybe Ronin this is something you can check out.

There is a doctor in Fl., Dr. John Upledger, specializes in craniosacral therapy.There is a clinic in West Palm Beach (?). They might be able to help you there- Good Luck.