Just diagnosed with LE

[dav]

I guess am lost and have a few questions, I found this site from the book "Living well with Lymphedema" And after all my reading and visting this web site I think I have the wrong DR. I was told in May that I have LE in my left leg. HOw I got it no one seems to know, I do know I had a real bad rash and now I have a real big leg, It is about 2 inches bigger then my right leg. All my Dr told me to do was to execise by walking or jump rope, the jump rope makes the fluid move. I do walk every night ( I have a year old lab that makes walk even when I don't want to) I also will sleep with the leg propped up at night, whish helps a little bit.She also told not much else you can do. I can tell you I can feel the leg getting bigger by the end of the day. I don't want this to get the best of me, and pain is so bad some days, any sugustion taht can help me?? Thank you

[Cassie]

Wow, dav, you sound so brave, and so determined to do what needs to be done to make yourself well again. I'm so sorry you're not finding the help you need with this, but I've gotta say you sure aren't alone. MANY doctors and nurses don't know there's treatment available, and they sure don't know how to find it, either. So here's my suggestion: go to the National Lymphedema Network at www.lymphnet.org and click on the Position Paper on Lymphedema Therapy in the upper right-hand corner. Print that out and take it to your doctor and insist that she write you a referral for evaluation and treatment by a qualified lymphedema (LE) therapist. While you're there, copy off the Position Paper on Therapist Training, and check out the article on this website called "LANA is Important." That'll help you understand what questions you need to ask a therapist before you go to her for treatment -- she (or he) needs to be fully trained. Here's a site with links to qualified therapists in your own area: www.mylymphedema.com .

This site has a wealth of articles that will help you along the way, and I'm sure going to be here rooting for you. Once you connect with a therapist you'll be amazed at the progress you'll make toward getting your life back!

Please come back and keep us posted -- you're an inspiration!
Cassie

[JackieDoss]

Unfortunately, it seems that many MD's have very little knowledge of lymphedema. Please do as Cassie suggested. Find a therapist that you want to use, and then ask your doctor to write a prescription (whatever the therapist requires) and fax it to that therapist's office. I have had to do that with my doctors. They have no idea what to write on the prescription... so you just tell them to write something simple like lymphedema therapy for right arm (or whatever your affected area is). Then let the therapist take it from there.

We must be our own medical advocates. Doctors are extremely knowledgeable, but the don't often agree with one another, and they don't know EVERYTHING!!!