Tamie's primary Lymphedema

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Tamie's primary Lymphedema

Postby patoco » Sat Jun 10, 2006 3:37 pm

Tamie's primary Lymphedema

Originally posted 02/20/2004

Getting diagnosed with Primary Lymphedema has been one of the most challenging experiences I have had to face in my life.

The swelling began in my left foot at the age of 13 years old. The foot swelled up for no apparent reason and went back to normal within a few days. When I was 15 I noticed that not only my left foot but also the leg up to the knee was swollen. This time the swelling did not go away... and elevation hardly helped at all. bigger.)

I was sent for a Venogram (an X-Ray where dye is injected in the leg to check for a blood clot. There was no blood clot. The doctor thought it might be Reflex Dystropy but no other tests were performed at that time...

From 15-17 years old I began experiencing a lot of numbness and tingling sensations in my arms and hands. During my first pregnancy at 19 years old my hands started to swell. I saw a doctor who said the swelling wasn't that serious, but be sure to take a sit down job. I was working in retail at the time and often as a cashier which standing in one spot all day makes the condition worse!

When I had my 1st child at the age of 20 and was recovering from a c-section the doctors were concerned with my swollen leg that I might get a blood clot in it so I had to wear compression hose during my 2 week ordeal/recovery.

At 22 years of age I saw a 3rd doctor who put me on diuretics to bring down the swelling. It did not work. So I went to doctor #4 who said the swelling wasn't really that bad (at that time it was so bad that the skin on the top of the foot bubbled up over my toes, like a shelf). And I could feel pressure like my skin was being stretched.)

At 23 years of age I had a large 4X4 beam fall on my left foot. The foot swelled up about 10X that pictured above. I had to have XRAYS to see if the bone was broken. The bones were fine, the skin was bruised. Doctor #4 joked that the edema served as a shock absorber. I didn't think it was funny though.

At 25 years of age, when I got good health insurance, I saw doctor #5. Due to the numbness and tingling she thought it would be good to send me to a neurologist. Doctor #6 tested for Lupus, Lyme Disease, Multiple Sclerosis and Rheumatoid Arthritis. I even had an MRI of my brain to check for Multiple Sclerosis. But the doctor was leaning towards a diagnosis of Rheumatoid Arthritis. Then I lost my insurance and I couldn't go back to him.

After September 11, 2001 I was stressed out and had a bad flare up in my hands and wrists where they got even more swollen, painful and weak. So I went to a family Doctor #7 and told him about how the neurologist thought it could be Rheumatoid Arthritis. I was put on Salsalate (a.k.a. Salaflex) 750mg 1X daily. Miraculously, the swelling in my foot went down about 75% within a few days. X-Rays of my hands and feet were done to check for RA type bone damage. There was none. And a second blood test for RA factor was also negative...
I was referred to Doctor #8, who did a tender point test for Fibromyalgia and told me that I have Fibromyalgia and it could cause one leg to swell this way and not the other. Having many friends who have been diagnosed with Fibromyalgia, I knew better and I didn't buy into the diagnosis.

These past few years I have been hinting to my Primary Doctor that I wanted a second opinion but he didn't get the hint...

I started praying to God to heal me, or at least show me what is wrong with me.

This past Christmas my mother came to visit (she lives in another state). She said she'd told her Cardiologist about my left foot and how it swells and he said, "I know exactly what that is, it is lymphedema."

I didn't think much of what she said, I thought "Oh great, another something for me to look up and worry about"... so I didn't. Trust me I researched Multiple Sclerosis, Lupus, Lyme Disease, Reflex Distrophy and Rheumatoid Arthritis when they were mentioned. And worried myself silly

Within a few weeks after that I was online and went to a Fibromyalgia message board and asked the other people there about my symptoms, if they could relate to them. Of course they couldn't. And one said... "It sounds more like Lymphedema."

So then I started researching Lymphedema on the web. And finally I was seeing pictures of people with swelling in one limb like me! So started taking pictures of my feet when they were at their worst and printing out info off the web. I took this info and the photos to my doctor (#7) who said "It can't be lymphedema because your swelling pits and lymphedema does not." From what I had read, I knew that what he said is not true and that a lot of doctors just aren't informed about this condition enough. So naturally I had to get a second, or in my case, 9th opinion.

I went to a Lymphedema clinic for an evaluation and was seen by a doctor who specializes in Lymphedema and he diagnosed it as... Primary Lymphedema.

Now I can begin treatment and hopefully keep this under control. It took 17 years and 9 doctors to put a name to this disorder and I am telling my story to help raise awareness.

There are photos of my feet and hands at http://vwriter.bravepages.com/Lymphedema.htm
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