Just diagnosed after 13 years

[Miraclle]

I started with a new doctor about a year ago, but I never showed him my legs till last week. Guess after so many years of the drs saying I just have to loose weight I gave up asking. But I went away for the weekend to a 3 day seminar. I got back 2 weeks ago and I was in so much pain, fluid leaking from my poors, and celulitis (being in the health field for years I know what it looks like). So I went to my dr and said "Doc I have celulitis and severe edima and leaking again. I know you cant decrease that bloat but I need an antibiotic." he had me remove the layers hiding my legs. As soon as he saw them he said "Elephantitis, stage 3 lymphedema." and walked out of the room. I was thinking 'hey you cant walk in and walk out and nothing? I am in pain.' but before I could say anything he called me into his office. On his computer were legs that looked just like mine. He goes "this is why you can't loose weight. Every time you do your upper body shrinks, but your lower body grows. This is why you get frustrated and quit dieting" I just stared and stared. He gave me a script for the anti biotic and told me to find out from my insurance company which lymphedema specialist do they pay for. Luckly we have a lymp specialist physical therapy place 2 towns away. They scheduled me for the 29th. They hope to have the celulitis under control by then cause they wont start treatment till it is.

I have been doing alot of reading, but I have hope now. I always felt frustrated and guilty about my weight. Felt horrid that cause I never saw any decent results weight wise that I gave up on dieting easily. Maybee the center can figure out how to reduce my legs and help me loose weight.

Melanie

[LymphedemaGirl]

How wonderful that you will finally get treatment for your Lymphedema, I feel happy for you! Your story goes to show just how little even doctors are aware of this condition. You are lucky your new doc knew. So many people are walking around with lymphedema not knowing they have it, never being treated. This spring I went to a Lymphedema workshop and talked to a women with a story similiar to yours. I don't know her age, but I'd say she was around 50, and she was only diagnosed 12 years ago, after reading about a lymphedemapatient in a womans magazine, thinking "hmm, this looks like me" and then presenting her doctor with the matter. Only then was she diagnosed and started having treatment which helped her tremendously. I was gobsmacked!
Anyway, congratulations on your long awaited diagnosis, I am sure the center will help you get lymphatic drainage, bandaging, compression stockings etc.

[NannyEast]

After years of trying to deal with swollen legs and ankles in particular, it was a relief when I was diagnosed two years ago. I am 59 yrs old and, like Melanie, I felt like such a complainer. Then I developed little sores all over my lower legs which I just thought was some kind of weird rash. My family doctor didn't recognize it and sent me to a plastic surgeon. The plastic surgeon walked into the exam room with an intern and stopped short about 5 feet from and said "Now, that's classic Lymphedema." He then explained what lymphedema was, as much for the interns benefit as for mine, and he wrote prescriptions for compression stockings, a cortisone cream and an antibiotic. He explained why and how to elevate my legs above my heart, how to care for my skin and the fact that skin care was crucial. (Now that I am battling a really bad case of celulitis, I know how right he was.)

I wish there were more people posting here too but I am just as guilty as anyone else when it comes to regular posting. I suffer from chronic pain because of several health problems and some days I just don't even want to open my eyes. BUT life does go on, unfortunately, and we have to put that one foot in front of the other. I have been sitting here too long so I can't write any longer. Hope you're having a good day today.

[Wanda]

Your story is an inspiration as to how lucky one can be to find a doctor who knows what lymphedema is, and how it should be treated.

My story isn't as dramatic as yours -- but rather the reverse. I got lucky (well as lucky as you can get when the diagnosing doctor says, "You have lymphedema.") I was so forth was a prescription to "find a lymphedema therapist and get treatment." I found a therapist, well he said he was, and he explained that "at this point the massage is performed. Feeling really miserable, my reply was, "Well do it!" His response, "Oh, I don't know how to do it. Here take this sleeve and wear it -- it is a sample that a salesman left me."

My story does get happier from here. Over many years I've had excellent therapists and wonderful care. I will not forget #1 therapist -- and I will forever be greatful to the others who have helped so much.

May you too find have excellent care.

Wanda