United Brachial Plexus Network, Inc.

First of all I want to say thank you to all the people that have answered my postings. The only problem is that I still really dont know what to do. I dont know of any doctor that deal with brachial plexus. I also am not sure if I even have this. I was hoping to find someone who can tell me what type of things that are associated with this. I have been going through this for now 17 years, is that possible that I could have this brachial plexus for that length of time? I have so many symptoms that really do have the same signs as MS but I do not have any lesions on my brain. I have been to many neuros that I dont know where to turn now. I have been to 5 neuros out of those 5 2 said that I have MS and 2 said no I dont out of those 2 1 said that he was not sure but then gave me to his P.A. which I was not happy about I said that I wanted to be seen by him but then she got so snippy and gave me alot of hassel. Then I went to this last neuro and he is the one that said I have BPI when I asked him about all of the other symptoms he just said they were all symptomatic. What is that? The other neuro I saw when I was being treated for severe mirgraines and all he said was that he didnt feel that I had MS but I most diffenetly had a demylination disease,but what other demylination diseases are there? I really need some help with all of this the last doc I saw said that he didnt want to see me back until I had atleast 3 months of PT to help with the brachial plexus. I was going to PT but then I had to stop because I tore a cartlidge in my knee and needed surgery for that. I now have been just released from that surgeon so should I go back to PT for the brachial plexus? Oh and by the way the doc that wrote out the script for the PT was my family doc. not the neuro.. and she wrote as the dx was MS. I am so tired of going to doc's and then finding out they are not sure of what is going on and Iam the one that gets no answers. So if there is anyone out there who can help me I would be so greatly appreciated.. Please include what type of symptoms go along with BPI and should they last as long as 17 years with some degree of worsting. thank you so much....kjtj

Sorry I forgot to include that I am from the Philadelphia area. So if you can also recommend a doctor that may be able to help I would also appreciate it very much.....kjtj

Hi... I will email you the name of the doctor that my client is referring you to in Philly...

You may want to ask the docs at TCH as well - go to www.texaschildrenshospital.org Patient Care Centers - SELECT CARE CENTER - Brachial Plexus..... they have all their emails listed there.

Ask them what they think and maybe they can take you on as a patient or refer you to someone in the medical center that might be the best to assess your condition?

I will keep you in our prayers,
francine

HI FRANCINE, I WAS WONDERING IF YOU EVER SENT ME THE NAME OF THE DOCTOR THAT YOUR FRIEND GAVE YOU THAT IS IN PHILADELPHIA? IF SO I NEVER RECIEVED IT SO CAN YOU PLEASE SEND IT TO ME AGAIN. I AM REALLY SO VERY CONFUSED AND STILL NOT SURE IF I REALLY DO HAVE THIS BRACHIAL PLEXUS. I WENT TO SEE A NEURO FOR A ANOTHER OPINION OF MY DX OF MS AND HE SAID THAT I DIDNT HAVE MS BUT WHAT I DID HAVE WAS BPI. THAT WAS IN JUNE AND I HAD 2 TEST DONE ONE WAS A EMG WHICH CAME OUT ABNORMAL AND THE OTHER WAS CALLED ANST/QST TEST WHICH ALSO CAME OUT ABNORMAL. THE EMG SAID THAT I HAD SEVERE NERVE DAMAGE TO BOTH ARMS IT ALSO SAID THAT I HAD SEVERE CTS AND ULNAR NERVE DAMAGE IN BOTH ELBOWS BUT THE RIGHT ELBOW WAS WORST. THE SECOND TEST SAID THAT I HAVE VERY POOR CIRCULATION IN BOTH ARMS. ARE THESE SOME OF THE TEST THAT ARE DONE TO SEE IF I DO HAVE A BPI? IF NOT WHAT ARE THE TEST THEY DO TO SEE I THIS IS WHAT I MAY HAVE. I ALSO GAVE THE DOCTOR A LIST OF QUESTIONS TO BE ANSWERED WHEN I CALLED TO FIND OUT THE RESULTS OF THESE TESTS. WHAT HE SAID TO ME WAS WHY DID I WAIT SO LONG TO SEE A DOCTOR ABOUT THIS!! I WAS DX WITH MS IN 84 AND SEEING A DOCTOR FOR THAT WHICH IS WHAT I THOUGHT I HAD. THEN WHEN I ASKED HIM TO ANSWER MY QUESTIONS I HAD THE LIST WITH ME ALSO AND WHEN DOWN THE LIST OF QUESTIONS BUT ALL I HEARD WAS THEY WERE ALL SYMPTOMATIC!!! WHAT IS THAT SUPPOSED TO MEAN? AND HE SAID THAT HE DIDNOT WANT TO SEE ME UNTIL I HAD AT LEAST 3 MONTHS OF P.T. HE SENT ME TO A THERAPIST BUT THE GUY SAID THAT HE DIDNT THINK HE WOULD BE OF MUCH HELP AND WASNT SURE IF THE DX WAS RIGHT. SO WHEN I TOLD HIM THIS HE SAID FOR ME TO ASK MY FAMLY DOCTOR TO FIND ME A THERAPIST. SHE SENT ME TO AN AQUATIC THERAPY PLACE I WAS THERE FOR ABOUT 3 WEEKS AND THEN I HAD A PROBLEM WITH MY KNEE. I FOUND OUT THAT I HAD A TORN CARTLIDGE IN MY RIGHT KNEE WHICH REQUIRED SURGERY. NOW I HAVE BEEN RELEASED FROM THIS SURGENS CARE AND WANTED TO GO BACK TO P.T SO I CAN FIND OUT WHAT IS GONG ON. SO I CALLED THIS DOCTOR AND HE TELLS ME THAT I SHOULD GO BACK TO THE FIRST P.T. I HAVE BEEN GOING CRAZY WITH NUMBNESS, BURNING AND PAIN IN MY FACE, NECK, ARMS, BACK AND LEGS. ALONG WITH OTHER SYMPTOMS. SO WHERE DO I GO FROM HERE. CAN YOU HELP ME? CAN YOU PLEASE SEND ME THE EMAIL AGAIN. I WOULD REALLY APPRECIATE IT SO VERY MUCH. THANK YOU , KAREN

I dont think I know anything that will help you Karen, but I wish to offer you blessings thru this time, I hope you can just try and hang in there- time takes time, but at 17, thats a hard one-
just focus on solutions, and acceptance and positive flow and bless yourself with prayers and a beautiful attitude- and keep looking for answers-I can see you are sharp and persistant- that will get you far young lady- I hope you stay in touch- feel free to email me altho likely I wont have any solutions, just an ear- mary
mom@bellsouth.net

Hi, Karen. I am sorry that you are going through all this pain and frustration. I don't have a lot of advice to offer you unfortunately. If you haven't already read it all, there's some excellent information in the Awareness section of this site as well as at the TCH site which Francine directed you to, about BPIs. That should give you a good idea of what a BPI entails. I do not know if you have a BPI, but it sounds like if you do, then that might not be all that is going on. I say that not as a medical opinion, but just as a Mom of a child with a BPI who has read a lot of info. and personal stories and hasn't heard of someone who has a BPI having as many symptoms and areas of pain as you do. I hope that you get some answers soon. I also hope that you can find a good pain specialist to help you deal with the pain in the meantime. The topic of pain management has come up on the adult board of this site, so perhaps you will find some help there as well. Also, as long as it's not contra-indicated for your condition, I hope that you can get into the warm water pool again. I imagine that must have provided some relief for your pain too? Even if you don't get into a program with a therapist, but just do something on your own, I would think it would be better than not at all. Please let us know when you find some answers. Take care. -Tina

Hi Francine, I did write to them and got back something saying that it was the wrong address or something but I do know it was not cause I used the address they had on there. I am about ready to go out of my mind at this point. I went back to my family doctor and told her want this neuro said about not going back to see him until I had atleast 3 months of therapy. I have not seen him since June,which was my first and only appointment with him. She told me that she was looking into a doctor that worked with brachial plexus patients. I do think she said his name was something like Dembrow although I am not sure. She also told me that she was going to call him and she said that he would give me a very good examination and let me know if this is the right dx and then set me up with the proper therapy. I am still waiting to hear from her. I was going to see if she was in the office tomorrow and see what is going on. I dont know how much longer I can go on like this not knowing what is going on cause I am having alot of problems with my eyes like focusing problems. So if you still have the name of the doc that your friend gave you? cause if you do can I have it please? Thanks, Karen

I had emailed this but I guess you didn't get it...

Pennsylvania Hospital, (now part of the Univ. of PA Health System)
Parkinson's Disease and Movement Disorders Center
700 Spruce St.
Suite 305
Philadelphia, PA 19106
(215)-829-6606

Dr. Matthew Stern and Dr. Siderowf is who she saw. She also said that there are several other good doctors there.

Maybe they can get you someone who is very familiar with brachial plexus injuries?

Good luck,
francine

Hi Francine, I wanted to say thank you for responding so fast. I also wanted to say that I will try and give them a call. I will let you know what happens. Thanks again, Karen