Quote:
Originally Posted by MelodyL
Hi there Gabbycakes:
Every month, on the 3rd Thursday of the month we all meet at the CBS building in NYC, in a big room with a big table. As a matter of fact I have a video up on youtube which will show you what a meeting looks like.
Here is one of the videos that I have up. You can link to my others. Just look for where it says PN Meeting. I have two others which actually show one of the people from the Neuropathy Association and what their goals are.
So go here first.
http://www.youtube.com/watch?v=s-WFkd7H4TQ
And you'll see me, and Glenn from Neurotalks and you'll see how we all get along and we have coffee and cake. It's a support group, not a seminar.
But we do have the occasional guest speaker or doctor come and speak to us. That's why we are all VERY interested in what this new guy will say when he comes next month. I shall report back here.
I know you are looking for a fix. We all are. The only helpful thing I can share with you is my experience with diabetic neuropathy. I have been taking 5000 of the Methyl B-12 for over 2 years now.
BEST THING I EVER DID.
Hope this helps.
melody
P.S. I don't know where you live but if you give me the location of your city, I can try and find you a support group as close to you as possible. |
Melody,
Thanks so much for the reply. Love the UTube video.
I would love to come to the next meeting. I know the city pretty well so it's not a problem getting there, I live in NJ.
I hope I would not be intruding because I don't have the typical PN that most have. I always read about PN in the feet, hands but mine is in the elbow area. My injury was a serious one, I had to have a prosthetic elbow inserted, many complications, many surgeries to fix the complications, then came the RSD and there treatments. Years later I am doing pretty well but still left with this strange type of constant pain, most of the RSD symtoms are under control. So to sum up I have been trying to get someone to work with me to find out if I definitly have PN, my doctors who have worked with me for years, say yes you do have some PN in there. But after all I've been through I keep getting answers like theres not much to do, it's not that bad. But for me if I could get rid of this last bit of pain and discomfort I would almost be back to normal. It's a very strange pain and effects me in the endurance area which keeps me from doing things like vacuum, sweep, garden anything that you have to use your arms for and keep them moving, like pushing, pulling etc. yet I can probably lift 50lbs it's very strange. So that's my problem.
Thanks Again,
Gabbycakes