Tuesday, February 1, 2011

Tamie's Story: 15 years to Diagnose Correctly

The first time my left foot swelled I was just 13 years of age. My parents wondered if I had been bitten by a bug or something. With elevation, the swelling went away. It came back with a vengeance two years later.

I saw a family doctor who sent me to have an x-ray in which contrast dye was ran through the leg to check for a blood clot. There was none. The doctor began to suspect I might have a condition called Reflex Sympathetic Dystrophy. She wanted to have more tests run, but my family could not afford them at the time.

A few years later, when I had health insurance, I saw another family doctor about my condition. My foot and leg were horribly swollen below the knee, and it had gotten so bad that I could barely remove my shoe at the end of the work day. The doctor told me that it was normal swelling and could be alleviated by elevation. He also recommended that I take a sit-down job so as not to aggravate the swelling any farther. This advice wasn’t much help. I was quickly becoming frustrated because I felt as if I weren’t being taken seriously by my doctor.

I saw yet another family doctor a few years later (1996) who also did not know what condition I had. In 1999 I was finally referred to a specialist because of some neurological symptoms I was having, not in the foot, but in my hands which also are prone to swelling. The doctor had some tests run to rule out conditions like Lupus, Multiple Sclerosis and Rheumatoid Arthritis. He was leaning towards a diagnosis of Rheumatoid Arthritis, but because I lost my insurance that year I could not have the testing that was needed.

Once I had insurance a few years later, and after a bout with pain in my hands and inflammation, I saw a new family doctor, wanting a referral back to the doctor who thought I might have Rheumatoid Arthritis. I was put on a drug called Salsalate a.k.a. Salaflex which is an NSAID and surprisingly took much of the swelling in my left foot and leg away. X-Rays of my feet and hands did not show Rheumatoid Arthritis, but I was given a referral to a rheumatologist anyway.

In November of 2001 I was seen by the rheumatologist to be sure I didn’t have a case of Rheumatoid Arthritis. This doctor suspected a case of Fibromyalgia instead. He did some sort of test, pushing different spots up and down my spine and said because I had certain sensitivities, that I had Fibromyalgia and that it had caused my foot and lower left leg to swell this way. Now, I knew someone with Fibromyalgia and I knew she complained of widespread musculoskeletal pain all over her body. I didn’t suffer pain all over my body. I refused the diagnosis and the treatment of some pill to help me enter stage four sleep. I thought that doctor was a quack. I was very angry that he insisted that my lower left leg was swollen due to fibromyalgia.

Having great difficulty finding shoes that fit I became more and more frustrated over the years. The doctors I saw didn’t seem to really know what caused my lower left leg to swell the way it did. I found it embarrassing to have this grotesque deformity. I couldn’t wear any shoe that didn’t come with a Velcro strap, or wasn’t cut like a Mary Jane. Really, all the shoes I found weren’t wide enough for my fat foot to fit into.

Now this may seem a little bit strange to you, if you aren’t a person of faith like I am, but in late 2003 I was watching a Christian show called The 700 Club and the hosts Terry Meeuwsen and Gordon Robertson were praying over viewing audience members, calling out conditions that the Lord was healing. I watched with great interest and prayed, “Lord, if you won’t heal this condition with my foot, then please at least let me know what it is.”

About three weeks later I received a phone call from my mother in Texas. She said, “Tamie I told my doctor about your leg and he said he knows what it is wrong with it. He said it is something called lymphedema.”

I looked up the condition on the internet, and much to my surprise, I began to find pictures of people with mismatched legs, one grossly swollen and the other normal like I had. My mother’s phone call was an answer to prayer, or so it seemed.

I found the National Lymphedema Network Website, and an article on it which talked about how doctors often overlooked the diagnosis of lymphedema. They had a letter to print out and take to the doctor with a list of things to look for in diagnosing lymphedema. I was so excited! I took the papers to my doctor. He laughed at me for thinking I had this condition! I would say his name, but I don’t want to get sued so I’ll be nice. He told me about the type of swelling that lymphedema patients have. He told me that because my swelling “pitted” I could not possibly have lymphedema. We got into an argument. I grew frustrated. I needed his referral so my insurance would pay for a visit to the Lymphedema Specialist in South Bend, Indiana. He refused to give it to me. What he said was, “ I am going to prove to you that you do not have this condition. I am going to send you for an MRI.” So the MRI came back showing that I had soft tissue swelling, which he said meant I did not have lymphedema.

I saw the Lymphedema Specialist anyway and had to pay for it because I did not have a referral from my ignorant family doctor. I told the specialist about my history, about how the symptoms came on when I was 13-15 years of age with no known cause. I told him about the doctors I’d seen over the years and various tests I had run. He examined my leg and had it measured in different areas just as the first doctor I saw back in 1989 had done. He said the story I told him was an all too familiar one, and so were my symptoms. My diagnosis was Primary Lymphedema Type II: Meige’s Disease. This is the kind of genetic lymphedema that comes on around the time of puberty, or after. It is usually seen in one leg, below the knee, and in girls. It is caused by having underdeveloped lymphatic vessels.

The Lymphedema Specialist had me measured for a 40mm compression stocking. He recommended Manual Lymph Drainage as treatment. I soon learned my insurance company would not cover it so I never got it. The doctor assessed my lymphedema as grade II-III, with the fibrosis (hardening of tissue) taking place in the lower portion of my foot, especially the toes.

I continued to take Salsalate for several years after the diagnosis, but it eventually stopped working. I think it is because so much tissue has hardened now, and the swelling is just building on top of it. It is irreversible. Of course, it doesn’t go down very easily with elevation. I wear a lighter compression stocking because the ones they prescribed I could not get on easily, and when they did, there was so much slack in them that it pinched parts of my leg. Do they make them for short people? I asked one manufacturer that question. The answer was no.

As for shoes, I’ve learned over the years that it is pointless to walk around the mall, as my foot increases from the walking, going from store to store trying to find a shoe that will go on my “fat foot.” I once went to a special shoe store that has now closed. They carried extra wide shoes and I found this lovely pair of black mary jane’s by Propet. So I purchased a size 7 4E (that’s 4 extra wide). I had to have the velcro strap lengthened about 4 inches on the left shoe and shortened on the right. I love my shoes, snd I’m in love with the brand Propet. I have bought a couple other pairs of shoes by Propet through Shoebuy.com . They offer free shipping to you, and free return shipping if the shoe doesn’t fit. I can usually tell by looking at a shoe if I can even try it on or not. Anything that has fabric above the lower part of my foot (not cut like a mary jane) usually won’t go on, unless it is a lace up type shoe.

I would like to add one more thing before I close this story…

Thanks to the ignorance of the medical community it took me 15 years, 9 doctors and two specialists before I got a correct diagnosis. That diagnosis came after prayer, and a heated argument between my ex-family doctor and myself. Through the years, though I’ve obviously had something wrong with my foot, time and time again I felt like I was being treated like a hypochondriac (someone who pretends to be sick to get attention) by doctors who belittled me by not taking this disease seriously. I feel the vast majority of the medical community is uneducated about lymphedema and how to properly recognize it.

On my website, http://www.lymphedemastories.blogspot.com, I now share my story and the stories of others to raise awareness in hopes that one day this condition will be easily diagnosed and treated by the medical community. The risk for not treating lymphedema is that the swelling, if not kept in check, hardens and becomes prone to infections like cellulites and even gangrene.

 I thank my God for leading me to the correct diagnosis.

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