United Brachial Plexus Network, Inc.

I would like to know if there is anyone thatcan help me with the symptoms of brachial plexus. I was dx in 84 with M.S. Then I went to get another opinion but this DR. does not agree with this opinion. He told me that I had brachial plexus, now I did have a posting on another board here and someone suggest that I post it on this board, so here I am.. I really would like to know what type of symptoms you have with this?? Also I did talk to someone that was on the other board and they told me that if I could raise my arms or rotate them then they didnt think I had brachail plexus.. I am so confused that I really need some answers. I can rotate my arms and raise them above my head. Is there anyone out there that can answer this question. I would deeply appreciate it. Take Care, KJTJ

Hi KJTJ, I'm not a doctor, but have spent the last two years with an injury to the brachial plexus. I would say that if you have any deficit in your arm or hand it could be a brachial plexus injury, or it may not be....it depends on where the injury is located. For example, if a person has an injury to the wrist which makes them unable to bend their wrist, this is not an injury to the plexus, even though a bpi may produce the same symptoms. I believe it would be best to see a specialist so that they can determine the extent of your injury. The plexus is quite a complicated tangle of nerves there under your collar bone, and the specialists could probably give you a reasonable yes or no pretty quickly. Also....just because one can raise their arm and rotate it doesn't mean they don't have a bpi. Sorry, much more complicated than that. I can rotate and raise my arm......but I assure you I have plenty other deficits. See that specialist, so you'll know for sure. Take care,......George

Hi George, First of all I would like to thank you for replying. What I was looking for was some of the symptoms that you have with brachial plexus?? You see not only do I have problems with pain in my arms but numbness and burning in the following areas, face, neck, back , arms and legs. I also go through lengths of times when I need to be hospitalize with the followings problems: vision, (focusing, pain on movement of eyes and blurred.) weakness of arms and legs, arms I have tremors and cannot hold onto objects, legs I have dropfoot and my legs give out on me. I have something called vertigo. I have problems with short term memory, fine motor skills, walking etc I can go on and on but then I would be taking more space up. Do you have any of these problems also?? Oh and there is another question I would like to ask how do I find a specialist in this area?? I live in Philadelphia.. Please get back to me on this anyone I really need some answers. Thank you, Karen

Hi, Karen. I usually post on the general board b/c I'm the Mom of a child who was injured during her birth, but I happened to be reading some messages today and saw that you're from Philadelphia. There are people from that area who post on the general board who might be able to help you. Just post a message and include "Philadelphia" in the subject. I know that they are Moms of injured children so they might only or mostly deal with pediatric specialists, but they might know of adult specialists as well (or the ped. dr. might be able to help you).

Also, Dr. Nath at TCH (TX Children's Hospital)is a very knowledgeable and exprienced BP Specialist. His primary focus is children, but he has helped some adults as well. You can read about their BP Program at http://www.texaschildrenshospital.org -- click on select a center - then click on Brachial Plexus. Also, you can call Lisa Davis, R.N., BP Program Coordinator at 832-824-3290. I hope this helps and I hope that you are able to find some help soon. Take care. -Tina

Hi Tina, I just wanted to say thank you for repling to my message. I did the first time I was here post on the general board, and I got a message from someone that is in the Ambler area. She was very helpful and told me that she is going to ask a dr. friend of her's to help me find a dr. who specializes in this.. I just got finished writing an email to a dr. in Pittsburg, who specializes in children and asked him to please refer me to someone. I am still not sure if this is the right dx. most people I have talked to dont seem to think so. Thank you again and if you do have any luck please get back to me I would really appreciate your help. My email address is Kkarencare@aol.com Thank you, Karen

Hi Karen, if you go to the homepage of this site and click on the 'resources' button there are links to BPI experienced docs on there from several areas of the States and some from elsewhere. I researched a lot and if i was ever gonna see a doc in USA (im UK) im pretty certain it would have been David Kline from louisianna state hospital, he literally wrote the book on this - good luck!

You sound like you have a combination of things going on...

Have you had a lymes test... more then one is necessary to get a good screening I think it is called Liza/Lisa..not sure...because of the symptoms you describe you could also have Epstein Barr Virus or Syndrome ... many of the things you describe fit both illness...
I would suggest you have a complete blood screening... Including Vitamin deficiencies...
I just insisted on have B-12 test because I was so tired... and they thought it was bpi and arthritis... but my feet were burning and that is classic so is memory etc... It turned out I was very low borderline... and my family gets pernicious anemia... so I get the shots again... Up until now I had to fight for every shot because the doctors did not believe it would do any good... yet as a child my family doctor gave them to me for obpi... just a suggestion about where to start... and a very good blood screening would really help.
I am not a dr. but have had experience with Epstein Barr and Lyme and Vertigo... I have a daughter who has battled all three and is still working on Vertigo through PT now... Good Luck
Kath