United Brachial Plexus Network, Inc.

hey... maybe michael jackson has erbs too LOL...LOL

My fingers on the good hand seem to get more numb by the day. I don't think anyone has run any studies because there is not interest on a condition that someone has had for 50 or 60 years and is not life threatening. Notice I didn't say quality of life. When the Dr. who did my EMG told me that I use the wrong muscle groups to move my Erb's arm, I asked him which ones and he chose not to answer. I'm interested. It's my arm. If I learn what I'm doing wrong, it may help me understand a new way to compensat-or if nothing else just give me some insight about exactly the what the damage is. Maybe I can't do anything about it, but I'm interested in it. I'm tired of being told that the neck problems and multiple ruptured disks aren't due to the OBPI. The Dr's I've talked to look at me like I'm nuts if I want to talk about the Erb's. It's frustrating. What we need is a Dr. with a purpose and the ability to get a grant to work on adults with OBPI. Wish I knew where to start. Pat.
Kath, send those bunny jammies or the Easter Bunny won't bring you any candy this year.!!!! I know him. Ever notice how he carries that basket? He was OBPI

Pat... not on your life.... not my pj's..... LOL....

Asking questions on the "old injury"
You hit the nail on the head... I asked questions and they look at me like "Why do you want to know now?"

Well, I always wanted to know but no one would answer me!! The last visit I went for the emg.. I was bleeding like a pig on my arm.... brused...well I guess the vein was in the wrong place!!!! wonder why???

I asked what was causing all the problems... He said: Its the old injury.... ok how bad is the old injury? well you have really done remarkable well so you understand...... STONEWALLED !!!!!!!

I also feel the older you get the less they see it as effecting the quality of our lives... Except for my Primary Care Doctor... SHE will look into anything I ask about and she also was soooo honest she said she learned very little if anything about Erb's Palsy... I think they get all the information from the Merk manual.... She knew me as super active and know this has really started to hold me back and down...

So it is up to us to-------- ...
Post are "silly question" ...
Post our ailments....
then connect the dots.
Find out all of the many secondary injuries we have in common.
and
compare and find out all of the many ways this injury effects our entire body...

Then petitiion some interested medical school to take a look at the data we have....

I wrote to the National Institute of Neurological Disorders.... T.Thompsons office and others ...
I got back e-mails saying they were directing my request to the proper departments...
I also got back a note that said they do not do studies but provide the money for those who are undertaking studies....

So now lets put on our thinking caps.

I also feel like you they think because I have this injury so long that I have all the information on it they do not realize that we who are older were deprived of our medical records. We were not allowed to read and review our medical information until about 15 years ago

Explaining it seems silly... its like WHY... What good would it do.... I hate the answer its the OLD injury.... Well what exactly is the old injury.... I know now because I have had tests and I had a pt tell me what he saw had so much atrophy and how one muscle was compensating for another...but that was because he was interested in helping me...

Ok jumping off the soap box... not sending my PJs.... and the Easter Bunny told me if you take my pj he would NOT leave you a Chocolate Easter bunny and he will hide your eggs in a freezer!!!!!!....
Kath