Discussions By Condition: Medical Stories

Meige's Primary Lymphedema, 15 years to a correct diagnosis

Posted In: Medical Stories 3 Replies
  • Posted By: tamiek
  • September 19, 2007
  • 04:04 AM

The first time my left foot swelled up I was 13 years old. The swelling subsided, but came back two years later and did not go away. The doctor I saw at that time took measurements of the affected limb and found the leg measured 1 inch bigger around in circumferance to just below the knee.

I was tested for a blood clot with a dye contrast x-ray. It showed no blood clot. The doctor wondered if I might have Reflex Symphathetic Dystrophy, but no further testing was done at that time.

The swelling foot issue would become more of annoying in my late teens as I started working full time. I'd find I couldn't get my shoe off at the end of the day. And often times elevating my leg, reduced the swelling very little. Buying shoes became a near impossible feat.

I would see several doctors over the years who would tell me that this type of swelling was normal in young women my age, and some even reccommended I take a "sit down job."

Really, is it normal for a woman to have foot that is about four times bigger than the other?

Eventually, due to a myriad of other symptoms I was experiencing including numbness and tingling sensations in my hands and legs, I was sent to a neurologist who did further testing for Multiple Sclerosis, Lyme Disease, Lupus and Rheumatoid Arthritis.

This doctor was leading towards a diagnosis of Rheumatoid Arthritis when I lost my medical insurance coverage... after which no further testing was done a that time.

Two years later, in 2001 I experienced severe swelling and pain in my hands. This led me to a new doctor, who continued testing me for Rheumatoid Arthritis.

I was referred to a Rheumatologist in the fall of 2001. In the meantime, my Primary Care Physician had prescribed Salaflex 750 mg 2 X daily to help the pain and swelling in my hands.

Then, it seemed as if a miracle happened... the swelling in my foot was greatly decreased. The foot didn't go back to normal size, but I'd say it was pretty close. Imagine 11 years of fluid build up, and most of it suddenly vanishes.

When I saw the Rheumatologist he rudely laughed when he saw my chart, the tests that had been done, and the assumption that I had Rheumatoid Arthritis.

He did a pressure point test up and down my spine. Then he told me that I actually had fibromyalgia, and it was causing my foot to be grotesquely swollen... that if I took some antidepressant it would help me enter stage four sleep and the swelling in my foot and hands would decrease.

I didn't believe him because the friends I had who suffered from fibromyalgia were often complaining of achiness and pain throughout their body and fatigue. I had never seen anything about fibromyalgia patients having one limb 4x the size of the other either.

To make a long story short, 3 years later my mother (who lives in another state) told me she had spoken to her doctor about my swollen leg and foot and he said he knew what I had, that it was called "lymphedema."

Mom said to look it up on the internet, and I did. There, some 15 years after the problem became permenant, I finally found pictures of people who had mismatched feet like mine. I read all the symptoms, the puzzle pieces fit. I printed out everything I could find, and took it to my primary care physician, in hopes that he would refer me to a lymphedema specialist for an "official diagnosis."

He wouldn't look at the printouts.

He told me that I couldn't possibly have lymphedema because the type of edema in lymphedema does not pit, and mine did. He again reassured me that this swelling was normal for women.

I was very upset and angry. Can you imagine years of wondering and worrying when one limb is grotesquely deformed, your feet don't match and you can't even buy proper fitting shoes. And your doctor insists that it is "normal."

Without a referral, I did go see the specialist and in 2004 I was diagnosed with Primary Lymphedema Type 2, Meige's Disorder.

From what I understand this is possibly a hereditary condition in which the lymphatic vessels have malformations causing lymphatic fluid to not drain properly.

It has been 3 years since my diagnosis, and I am now in stage 3 lymphedema. The fluid in my toes has hardened and become fibrotic.
The edema in my foot or lower leg does not pit anymore. It seems as if the codition is no long er responding to Salaflex, but for 6 years it did.

I have not been able to obtain Manual Lymph Drainage therapies because my insurance does not cover it.

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3 Replies:

  • HI, MY NAME IS LAURIE AND I HAVE A 14 YEAR OLD DAUGHTER, WHO HAS HAD A SWOLLEN FOOT FOR APPROX 6 MONTHS AND OTHER SYMPTOMS AND I HAVE SEARCHED AND SEARCHED AND I REALLY HAVE A STRONG FEELING THAT SHE HAS MEIGE'S PRIMARY LYMPHEDEMA. I WOULD VERY MUCH LIKE HER TO SEE A SPECIALIST TO GET THIS FIGURED OUT, BUT SHE HAS BEEN TO THE PEDIATRICIAN WHICH WAS VERY HONEST AND SAID HE HAS NO IDEA, NEVER SEEN ANYTHING LIKE IT AND HE WANTS TO START WITH A REUMATOLOGIST, BUT HE SAID SHE DEFINITELY DOES NOT HAVE RHEUMATOID. SO, I AM TRYING TO FIND OUT WHO WOULD SPECIALIZE IN LYMPEDEMA AND COULD TELL ME FOR SURE IF THIS IS WHAT SHE HAS? LAURIE CARLINjcarlin1089@yahoo.comThe first time my left foot swelled up I was 13 years old. The swelling subsided, but came back two years later and did not go away. The doctor I saw at that time took measurements of the affected limb and found the leg measured 1 inch bigger around in circumferance to just below the knee.I was tested for a blood clot with a dye contrast x-ray. It showed no blood clot. The doctor wondered if I might have Reflex Symphathetic Dystrophy, but no further testing was done at that time.The swelling foot issue would become more of annoying in my late teens as I started working full time. I'd find I couldn't get my shoe off at the end of the day. And often times elevating my leg, reduced the swelling very little. Buying shoes became a near impossible feat.I would see several doctors over the years who would tell me that this type of swelling was normal in young women my age, and some even reccommended I take a "sit down job."Really, is it normal for a woman to have foot that is about four times bigger than the other?Eventually, due to a myriad of other symptoms I was experiencing including numbness and tingling sensations in my hands and legs, I was sent to a neurologist who did further testing for Multiple Sclerosis, Lyme Disease, Lupus and Rheumatoid Arthritis.This doctor was leading towards a diagnosis of Rheumatoid Arthritis when I lost my medical insurance coverage... after which no further testing was done a that time.Two years later, in 2001 I experienced severe swelling and pain in my hands. This led me to a new doctor, who continued testing me for Rheumatoid Arthritis.I was referred to a Rheumatologist in the fall of 2001. In the meantime, my Primary Care Physician had prescribed Salaflex 750 mg 2 X daily to help the pain and swelling in my hands.Then, it seemed as if a miracle happened... the swelling in my foot was greatly decreased. The foot didn't go back to normal size, but I'd say it was pretty close. Imagine 11 years of fluid build up, and most of it suddenly vanishes.When I saw the Rheumatologist he rudely laughed when he saw my chart, the tests that had been done, and the assumption that I had Rheumatoid Arthritis.He did a pressure point test up and down my spine. Then he told me that I actually had fibromyalgia, and it was causing my foot to be grotesquely swollen... that if I took some antidepressant it would help me enter stage four sleep and the swelling in my foot and hands would decrease.I didn't believe him because the friends I had who suffered from fibromyalgia were often complaining of achiness and pain throughout their body and fatigue. I had never seen anything about fibromyalgia patients having one limb 4x the size of the other either.To make a long story short, 3 years later my mother (who lives in another state) told me she had spoken to her doctor about my swollen leg and foot and he said he knew what I had, that it was called "lymphedema."Mom said to look it up on the internet, and I did. There, some 15 years after the problem became permenant, I finally found pictures of people who had mismatched feet like mine. I read all the symptoms, the puzzle pieces fit. I printed out everything I could find, and took it to my primary care physician, in hopes that he would refer me to a lymphedema specialist for an "official diagnosis."He wouldn't look at the printouts.He told me that I couldn't possibly have lymphedema because the type of edema in lymphedema does not pit, and mine did. He again reassured me that this swelling was normal for women.I was very upset and angry. Can you imagine years of wondering and worrying when one limb is grotesquely deformed, your feet don't match and you can't even buy proper fitting shoes. And your doctor insists that it is "normal."Without a referral, I did go see the specialist and in 2004 I was diagnosed with Primary Lymphedema Type 2, Meige's Disorder. From what I understand this is possibly a hereditary condition in which the lymphatic vessels have malformations causing lymphatic fluid to not drain properly. It has been 3 years since my diagnosis, and I am now in stage 3 lymphedema. The fluid in my toes has hardened and become fibrotic.The edema in my foot or lower leg does not pit anymore. It seems as if the codition is no long er responding to Salaflex, but for 6 years it did. I have not been able to obtain Manual Lymph Drainage therapies because my insurance does not cover it.
    Anonymous 42789 Replies
    • January 29, 2010
    • 02:19 PM
    • 0
    Flag this Response
  • find your nearest lymphedema treatment center, ask them for the home use system, product manager for Flexitouch, Lance Willis, 866-435-3948 ext.5173. go to www.flexitouch.com.this is for drainage. Got from a friend with Lymphedema. QUOTE=tamiek;63718]The first time my left foot swelled up I was 13 years old. The swelling subsided, but came back two years later and did not go away. The doctor I saw at that time took measurements of the affected limb and found the leg measured 1 inch bigger around in circumferance to just below the knee.I was tested for a blood clot with a dye contrast x-ray. It showed no blood clot. The doctor wondered if I might have Reflex Symphathetic Dystrophy, but no further testing was done at that time.The swelling foot issue would become more of annoying in my late teens as I started working full time. I'd find I couldn't get my shoe off at the end of the day. And often times elevating my leg, reduced the swelling very little. Buying shoes became a near impossible feat.I would see several doctors over the years who would tell me that this type of swelling was normal in young women my age, and some even reccommended I take a "sit down job."Really, is it normal for a woman to have foot that is about four times bigger than the other?Eventually, due to a myriad of other symptoms I was experiencing including numbness and tingling sensations in my hands and legs, I was sent to a neurologist who did further testing for Multiple Sclerosis, Lyme Disease, Lupus and Rheumatoid Arthritis.This doctor was leading towards a diagnosis of Rheumatoid Arthritis when I lost my medical insurance coverage... after which no further testing was done a that time.Two years later, in 2001 I experienced severe swelling and pain in my hands. This led me to a new doctor, who continued testing me for Rheumatoid Arthritis.I was referred to a Rheumatologist in the fall of 2001. In the meantime, my Primary Care Physician had prescribed Salaflex 750 mg 2 X daily to help the pain and swelling in my hands.Then, it seemed as if a miracle happened... the swelling in my foot was greatly decreased. The foot didn't go back to normal size, but I'd say it was pretty close. Imagine 11 years of fluid build up, and most of it suddenly vanishes.When I saw the Rheumatologist he rudely laughed when he saw my chart, the tests that had been done, and the assumption that I had Rheumatoid Arthritis.He did a pressure point test up and down my spine. Then he told me that I actually had fibromyalgia, and it was causing my foot to be grotesquely swollen... that if I took some antidepressant it would help me enter stage four sleep and the swelling in my foot and hands would decrease.I didn't believe him because the friends I had who suffered from fibromyalgia were often complaining of achiness and pain throughout their body and fatigue. I had never seen anything about fibromyalgia patients having one limb 4x the size of the other either.To make a long story short, 3 years later my mother (who lives in another state) told me she had spoken to her doctor about my swollen leg and foot and he said he knew what I had, that it was called "lymphedema."Mom said to look it up on the internet, and I did. There, some 15 years after the problem became permenant, I finally found pictures of people who had mismatched feet like mine. I read all the symptoms, the puzzle pieces fit. I printed out everything I could find, and took it to my primary care physician, in hopes that he would refer me to a lymphedema specialist for an "official diagnosis."He wouldn't look at the printouts.He told me that I couldn't possibly have lymphedema because the type of edema in lymphedema does not pit, and mine did. He again reassured me that this swelling was normal for women.I was very upset and angry. Can you imagine years of wondering and worrying when one limb is grotesquely deformed, your feet don't match and you can't even buy proper fitting shoes. And your doctor insists that it is "normal."Without a referral, I did go see the specialist and in 2004 I was diagnosed with Primary Lymphedema Type 2, Meige's Disorder. From what I understand this is possibly a hereditary condition in which the lymphatic vessels have malformations causing lymphatic fluid to not drain properly. It has been 3 years since my diagnosis, and I am now in stage 3 lymphedema. The fluid in my toes has hardened and become fibrotic.The edema in my foot or lower leg does not pit anymore. It seems as if the codition is no long er responding to Salaflex, but for 6 years it did. I have not been able to obtain Manual Lymph Drainage therapies because my insurance does not cover it.
    Anonymous 42789 Replies
    • August 15, 2010
    • 05:30 AM
    • 0
    Flag this Response
  • I had the exact same problem. The swelling started for me at about 14 and it took me 12 years to get a correct diagnosis. I saw one specialist after another trying to get help with my condition. They told ne to lose weight, after I lost weight the problem actually got worse. Then I saw 3 different dermatologists who told me 3 completely different answers. The last dermatologist I saw told me to go to a vascular surgeon. The first vascular surgeon I saw told me I had a vein insufficiency and wanted to put me through surgery where they actually remove veins. I had the surgery scheduled and everything. By some fluke inconsistencies in my pre op blood work, they cancelled the surgery the night before. I saw a second vascular surgeon who told me I had a very mild vein insufficiency but not enough to need treatment and then literally dismissed me as a patient. By then, I was just exhausted both physically and emotionally from about 10 years of getting The run around. I actually got diagnosed finally at 26 by an associate of the doctor that was I was seeing to for my migraines. It took me almost a year of battling with my health insurance company to get approval for the treatment. I'm undergoing a combination of treatments now and it seems to be helping but by now, I'm in stage 3 and the damage is already done and irreversible. Ive had a few cases of cellulitis where I had to go into the emergency room, I have necrosis of the skin, I get skin ulcers and weeping on a pretty regular basis. It absolutely drives me crazy when I think of all the time and money I spent being proactive trying to get ahead of this and prevent it from getting to this point; and not a single doctor was able to help me. I even had one dr literally shrug their shoulders when I came in because I had 8 open and leaking ulcers in my legs. I had one dr tell me I had lymphedema but told me it was something different than what it actually was and there was no treatment. He told me that it was going to continue to get worse for the rest of my life and that I was gonna have to just live with it. And now, even though I'm getting treatment, I'm told I will never get better but just stay the same. I'm always gonna have pain and I'm never going to bs as active as I once was. The swelling has gone down but the pain is unbelievable. Even the dr who diagnosed me didn't actually know what was involved in The treatment. She had the general idea down but the treatment and maintainence is actually a lot more involved than she knew. Treatment centers are very hard to find for those that have both lymphedema and open wounds(ulcers) lucky for me the Treatment center is actually in the city I live in. I had to every day for about 3-4 hours for about 3 weeks. I'm going 3 times a week now. I get so angry when I read about people in similar situations as me. In most cases this could have all been prevented if just a few doctors had taken the time to use their seemingly endless resources to just do a little research and actually care about their patients. I'm only 26 and My life is permanently affected from this.
    Anonymous 42789 Replies Flag this Response
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