HELP!! Who do you see for lymphedema problems?

HOSPICE, genetics clinic, leaking legs, EMG, nerve conductions, phantom liquid feeling, chronic fatigue, chills, malaise, ankle pain, swollen feet, transient lymphedema, full body lymphedema, tissue hardness, dystonia, painful boil

Moderators: jenjay, Cassie, patoco, Birdwatcher, Senior Moderators

HELP!! Who do you see for lymphedema problems?

Postby nancy246 » Thu Jun 07, 2007 9:43 am

I am a 41 year old female. Last fall, I had a serious lymphedema issue. The left side of my face would swell during the night and take much of the day to go back down. I felt ill. My sinuses were also very swollen. The lymph nodes under my left arm and at the elbow were also enlarged. The lymph nodes at the bend in the arm are still not normal and I still have some dependent swelling of my face at night. Who treats someone for lymphedema problems? My general practioner sent me to an ENT and the ENT didn't know what to do - so he sent me back to my general practioner - who also doesn't know what to do with me either. I am told that we have Milroy's in our family. I have an Uncle that has severe lymphedema in the legs and recurring cellultis. I have two brothers that have lymphedema issues with their legs and one of them has had cellulitis twice (arm and leg). Since no one knows what is wrong with me, I go untreated and do not know who to see for this. HELP!
nancy246
 
Posts: 1
Joined: Wed Jun 06, 2007 10:48 pm

Postby JacquieC » Thu Jun 07, 2007 10:26 am

This is a good question, I was just recently diagnosed myself.
My experience has been that like you they all refer me back to my general practioner who is totally clueless about LE, after all, it was him who took almost a year to send me out to a Vascular Surgeon where I was finally diagnosed. Everyone just says follow up with your family doc.

Hang in there

Peace
JacquieC
JacquieC
 
Posts: 35
Joined: Fri May 11, 2007 6:32 pm
Location: Pa

docs

Postby suzeeq » Thu Jun 07, 2007 1:05 pm

Hi Nancy and Jacquie, I think we all know about how difficult it is to find a doctor who is knowledgeable about lymphedema. I live in Dayton, Ohio and there aren't any LE specialists here. I was diagnosed by a vascular surgeon and then referred to a lymphedema clinic in Cincinnati. The clinic was owned and run by an RN who, along with the rest of her staff, was certified in treatment. But there weren't any doctors there. I did receive great care. She referred me to a lymphedema specialist at the University of Arizona and I travelled there last Sept. and saw this doctor. I had testing which showed where the problems were. Even though I was getting great care at the clinic, it was a relief to actually see a doctor who knows all about LE. That was a one time trip only, but they have my file and if something really serious comes up, I'm sure that doctors here in Dayton could consult with her if necessary. I know that alot of people can't afford to do this, but my insurance company actually paid for it even thought it was out of network. So far I have been lucky, have never had cellulitis and have really not needed a physician. But like you both, my primary care physician is the one that I contact when needing to order new hose and such. I have learned so much on this site and appreciate all the tips that others give. So when I need a doctor's order for something, I just call the office, tell them what I want ordered, then pick up the prescription. ( I needed a prescription when having to change LE clinics). I do have a little advantage as I am a nurse, but all of the education I have received about LE has come from this site and other online research, and not by anythng I had in nurses training. There is a list of specialists on this site and maybe some are close to you. If you can afford it, it is definitely worth the expense to see one. Studies and research are being done at the Univ. of AZ concerning hereditary LE. Pat O'Connor who started this site lives in Atlanta and I'm sure has a LE specialist there ( he has Milroy's). I was given a great book, "Coping With Lymphedema", by Joan Swirsky, RN and Diane Sackett Nannery and have since found it at a book store. Great info. Good luck to you both!
suzeeq
 
Posts: 81
Joined: Mon Jun 19, 2006 7:05 pm

Re: HELP!! Who do you see for lymphedema problems?

Postby Kel » Thu Feb 17, 2011 1:32 pm

Hi suzeeq
I also live in the Dayton Ohio area. My daughter has lymphedema and we have gotten no answers from all the doctors she has seen. All they tell her is that it is probably a problem with her lymph system and that is why her leg swells so bad. They have no answers except that it is something that she will have to live with. What clinic did you go to in Cincinnati and is it still in practice? I found the Tri-State Lymphedema Clinic on line but the phone number listed says that it has been disconnected. Help!

Kel
Kel
 
Posts: 1
Joined: Thu Feb 17, 2011 1:05 pm


Return to Lymphedema Personal stories

Who is online

Users browsing this forum: No registered users and 6 guests


cron