My story

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: Birdwatcher, jenjay, Cassie, patoco, Senior Moderators

My story

Postby Newmommy » Fri Aug 05, 2011 7:30 pm

Last month I went to an appointment that made me cry, made me mad, and made me happy all at the same time. I finally got a diagnosis.

When I was 16 my left leg swelled up, it made the knee and ankle hurt. I just thought I must have done something but I couldn't think of anything. After a few months, My mom and I decided to start trying to find out what was going on because the swelling never went away and I was still hurting. I went to doctor after doctor after doctor. This happened for 2 years. Everytime the doctor said "I have no idea." I couldn't take it anymore. I decided to just deal with it. When I was 20, my boyfriend (now fiance!!! ) accidentally fell on my left foot. I ended up with a stress fracture behind my big toe. The orthopedic doctor I was sent to handed me his card and told me if I ever find out what is wrong with it to give him a call.

The day before I turned 21, I found out I was pregnant. (Great timing, huh?) The doctor I was seeing for my pregnancy said he'd never seen anything like it and as long as it didn't come near the baby he wasn't going to worry about it. I started getting pain in my left hip. I was terrified that whatever was going on with my lower leg had moved up near my baby. Lucky me, it was just my baby laying her head on my nerves.

I am now 23 years old. I have been in constant pain for 7 years. The swelling is starting to get so bad it hurts to walk sometimes, so bad to where I can't walk. It no longer pits like it used to. I started trying to go to doctors again. My primary doctor refered me to a podiatrist. The first thing he said after I told him my story and showed him the leg is I think its lymphedema and I'm going to send you to a lymphedema clinic to get an offical diagnosis.

I have stage 2 lymphedema. The therapist told me that I only had a few more years before I went into stage 3. I was happy because I finally know what it is. I was mad because all those doctors before had no clue. I cried because I was scared of what was to come.

I just finished a month of therapy. The tissues in my leg have greatly softened. I have also lost 2 cm. I am not in as much pain as I used to be. I am in a compression stocking now. I am still waiting on the pump to go through my insurance. I hope to get to know everyone and I'm pretty sure I'll ask all sorts of questions.
Posts: 2
Joined: Thu Aug 04, 2011 12:47 pm

Re: My story

Postby patoco » Sat Aug 06, 2011 10:52 pm

Hey Newmommy :)

Super welcome to our family here!!!!

Wow, your experience is soooooo very typical in what most of us have gone through. Very very frustrating and maddening.

That therapy should help a lot when it comes to managing the lymphedema (LE) and in helping forestall a change to a worse grade.

Please don't feel like you are alone anymore and don't hesitate for a second to ask any question - we are all here for you!!

My very very best

User avatar
Site Admin
Posts: 2175
Joined: Thu Jun 08, 2006 9:07 pm

Re: My story

Postby runnermom » Mon Aug 08, 2011 1:32 am

Hi newmommy,

I don't have much to say, since I feel really new to the whole lymphedema thing, too . . . I just wanted to introduce myself as another young lymphedema mom (with lower extremity and abdominal issues).

- runnermom
Posts: 15
Joined: Tue Oct 26, 2010 1:12 am
Location: Wisconsin

Return to Lymphedema Personal stories

Who is online

Users browsing this forum: No registered users and 18 guests