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

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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.
Newmommy
 
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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

Pat
patoco
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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
runnermom
 
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Location: Wisconsin


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