irish mum needs help

[joy]

hi my name is joy and i have a son who was diagnosed with breacheal plexus neuritus 7 yeass ago he was not involved in any accident or any thing like that so he was told that it is viral this year he has got worse he can hardly lift his arm and has a lot of waisting on his arm back and shoulder his neuroligest could not care less i heard about stem cell transplant and was looking to see if anyone out there has had it and what were the results my son is 29 now and gets very depressed and im realy worried about him i feel so alone i cant find anyone to talk to about if there is anyone in ireland please get in touch or if anyone has any info please reply im desperate joy.

[Drake's Mom]

My son Drake's Brachial Plexus problem is from a virus. I have to say it's very frustrating because the lack of information for viral induced BPI. It has been almost two years and not much has come back but he definitely hasn't gotten worse. He woke up one morning with absolutely no movement in fingers, hand or arm. Slowly little things are coming back on their own, he hasn't had any surgeries. He still doesn't have any wrist or complete finger extension, or tricep, or deltoid. We have seen quite a few specialist and they all say the same and that's "to wait and see". I'm sorry for your son's frustration, all i can say is keep up with the therapy everyday, that is what every doctor will tell you. Because the atrophy will take over quickly. It may seem like nothing is moving but if he can even hold a muscle in place that will strengthen it. Most of the time the muscles are not strong enough to move the arm or hand but can hold it in place. Drake cannot lift his hand up but if you hold it straight up and tell him not to let it fall down he can hold it a little while and when you tell him to relax, his hand will fall so there is something there working but not stronge enough to pull the whole hand up. Just keep practicing and tell your son not to give up. I have meet four other people on here that there BPI was viral induced.

I haven't checked into stem cell transplant so i cannot give you any information on that. I would just definatly see some more specialist in Brachial Plexus injuries.

Teresa
Drake's Mom

[m&mmom]

Hello,
I'm a naturopathic doctor and can provide information on how to clean viruses from the body. If you're interested email me and we can discuss.
Cindy

[joy donohoe]

hi every body, thank you for your emails if you remember i was teling you about my son mark who suffers from bpn well i was looking into stem cell treatment, ihave been in contact with 2 hospitals one in the dominican republic under dr rader and the other in houston texas under dr nath, the operation costs about 40 thousand euro. which i dont have, but i got a couple of phone calls from some friends of mine and they are organising fundraisers to pay for his treatment so hope to be traveling very soon. i am so excited i could believe it that people would do this for me iam so touched. so anyone out there who wants to go for stem cell treatment have a chat with friends. also is there anyone out there who has had it and what was the result,

[joy donohoe]

hi cindy would to chat with you about bpn.

[m&mmom]

Hi Joy, I emailed you.

[m&mmom]

Joy,
I tried to email you but it bounced back. Try emailing me at psu95@ptd.net and I'll respond to your message and we'll see if that works.

[rbwalton]

Hi Joy- I just realized you responded to my post earlier about BPN.

Currently, they think my BPN is viral, although I just got an MRI of my neck to rule out syrinx. This would be something to check for your son also if they have not since MRI shows a syrinx clearly if it is there.

I had my first sign of a problem around 8 years ago, with loss of movement of flexion of my thumb, index finger and middle finger of right hand- all following a short time of sever tendentious in my shoulder. Doctors told me I would have no return without tendon transfer surgery. I said , no thanks, I will wait it out. I now 75% return on my hand. But it took years of my constantly working my thumb and fingers with my left hand to keep the tendons limber. Stretching and movement will keep things limber until there is some return. It may not all come back, but your son should eventually get some return. For me, my index finger came back in a burst of nerve tingles that felt like I was touching a live wire. A couple of years later, I began to be able to move my thumb again, but even now I have very little strength in it.

While I was working on my thumb, I had the second loss. This one was with long thoracic nerve, so I have lost strength of right shoulder and shoulder blade is not in the right place. Stretching and doing exercise even when I barely had strength to lift my arm was key to getting any return so far on it. It is not 100%, but I am still able to work, although with restrictions.

One more thing. I am 54, and my doctors thought I was too old to get any return without surgery. I am not sure surgery would have been a help for me. It is hard to contemplate at times, and I can appreciate how your son is depressed about it, but he is young enough that his body can get a good return of what appears to be lost at this point. But, he has to work at it.

Good luck
Richard