United Brachial Plexus Network, Inc.

Hi! I have had BP with either CPRS I or II in my left arm and hand for about 7 months now. (Eeek! I know!) I had been going to a neurologist at the VA hospital, but became sooo frusterated with their incompetance, that I am attempting to seek out specialists.

That is where the madness comes into play. I have not been able to find 1 specialist, nor 1 active support group. I have aggrevated knee and back conditions, so I'm unable to sit all day at the computer to find answers.

So, I come to you, looking for answers, looking for suggestions, looking for ANYTHING! At this point, I still don't even know if I need a neuroligist, or a hand/arm orthopedic. If any of you are from AZ, I would highly appreciate ANY local info. To the others, I ask that you help me onto the right path.

Thanks,

Rob

I've talked to Lori, but she stated that the "group" function in Scottsdale is almost exclusively for those who has BP from birth. I am 35, and have had it for 7 months. I know that U of A is has a good medical school, do you know if they cover BP? Where have you been going? Do you knowof any support groups down there?

Any info would be highly appreciated! Thanks!

Hi Rob,
I also have a left tbpi with rsd type ii (causalgia) in my left arm. it took 4 1/2 years for me to be diagnosed with rsd as my tbpi was hiding it.

in terms of doctors, i have a neurologist for my bpi, an rsd specialist managing my rsd, and a pain doc when i need any kind of nerve blocks.

i know how completely horrible it is to not only have a bpi but the rsd as well. please feel free to email me at ladydanzia@purplechristel.com if you ever need to talk.

there is a great rsd website: www.rsdsa.org. i found my rsd specialist there, and one of the folks at the rsdsa also use him.
all the best,
gillian