United Brachial Plexus Network, Inc.

Welcome!!! Not sure if my first message went through or not. I am so glad you found this site. I myself jsut found it a month and a half ago. I am also 31, same experience as you. It's Erb's Palsy. Well what the heck is that??? There are so many great people here. I have met so many great friends in the last month I cannot keep up!! I am waiting patiently to hear from Dr. Nath's office to see if my insurance will be covering the surgery or not. I'm excited yet scared. If you have any questions please feel free to ask. Not that I'm much help yet!! But I'm sure working on it!!!
Good luck to you!!
Rachel

Hello Deanna
I am pleased you found your way here!
I told you that the support would be great and so it is!
welcome!
Karen Hillyer
Erb's Palsy Group
United Kingdom

Hi Dean-na I fel the same way as you.I only found this site a few weeks ago.I've never even went into a message board.How wonderful to know we are not alone.I am a fifty year old woman with erbs in both arms.Only the left was ever treated The doctors thought it was all in my head that my right arm and hand were in pain.The pins and needles are worse than ever.I also have scoliosis and some major neck problems.It seems I have cysts in my spinal chord which also causes some of the same symptoms.They have done two surgeries and put two shunts in.Of course I will have more surgeries in my future.I am on painkillers and anti spasm medication.I had not seen a doctor for the erbs in 30 years until I moved to N.C. They sent me for anemg thinking I mhad carpel tunnel.Also tested for ms.Some days are better than others so of course I kill myself trying to do whatever I can.My husband and children are supportive to a certain extent.That's why this site is a lifesaver.I to would like to know about anything that can help strenghthen what I have left. Andrea53

Welcome Andrea

It is amazing to find out you are not the only one with this injury.

I am so happy you found us. Finding all this information and others to share with changed me. It really helped me to get better medical care and take better care of myself. And one other important thing I learned was to fully understand the impact this injury makes on our total body.

We have two other bilateral obpi who post to the boards from time to time... Tina Baby are you out there? and Chris... so you are really not alone.

I am right obpi and a mother and grandmother and 63.
I am not the oldest because we have one other older than I...

If you have any questions please just ask away someone will have an answer for you.

I just found out a two weeks ago I have some sort of intrusion in my spinal cord besides compression from degenerative disc... it may be from birth I don't know yet... strange I wonder if it is connected to obpi.
Again welcome
Kath

Andrea:

Welcome! I am so glad that you found us too!! I have found out so much from this website. People give great advice & know a lot about Erb's.

I thought I was the only one that every had been born like this. I was really wrong.

Anytime that you have a question or concern, post it. It makes me feel good when people post something & I can relate & then I put my 2 cents in.

Take care!!

Deanna

To all Thank you so much for your reply.I told my family I had written.I guess because I was so excited I expected them to match mine.It shows they may love me but don't understandfully what my life has been like.Since early school days I became pretty good at hiding my erbs.After all what kid wants to be different.As I've gotten older it is harder to hide it.Somebody said they have strange gait.Do they mean they stagger or l0ose they're balance?I always thought mine was because my center of balance was off.I checked your doctor list for NC,and they're aren't any.Is they're anything that can help improve pain?The migraines are getting worse because my soinal chord is being pressed in my neck.I have been on neurontin and quite a few migraine pills.I'm also on valium for spasms and amytriptaline.As I get used to them they increase my dosage.Basically I've been told eventually I'll be in a wheelchair.To determined to let that happen any time soon.Thank you all again!You have helped more than you'll ever know.Does anyone know how to get stuff to adapt computer?Got rid of mouse but typing can aggravate my hand and wrist.Thank you all again.Andrea

Rachel:

Hey! I won't lie about the EMG, it does hurt. Someone told me that after the test & the next day you will hurt and be sore. They told the truth.

The test don't last very long. The main thing is when they tell you relax, relax. That will help them with the needles. I know it is kinda hard to relax when someone is about to stick a needle in you, but it is well worth it. The information they get out of this test is something else.

Deanna

sorry...posted on the wrong subject...