finally I know what I have ... Lymphedema after being misdiagnossed for 3 years

[missy98writer]

I went to the hospital on November 16, 2005 in Oklahoma City and OU Medical Center because my right foot was 42 inches around, My big toe on my right foot was five times it's normal size and my leg below my knee was gargantuan. My right leg weeped constantly and I had a severe infection causing me cellulitus. I also had ulcers and open sores on my gargantuan sized right leg. I the past I was sent home three other times In ER rooms by three other doctors with the wrong diagnosis of dependent edema. Finally on November 16 at OU Medical Center the doctor in the ER said I had lymphedema. The doctors all three of them advised me I had the worst case of lymphedem they had ever seen. The head of the vascular medicine took photographs of my right leg. He advised me I was going to be a case study for LYMPHEDEMA. Now properly diagnossed I sent information to my lawyer. He is trying to get me disability since I can't work and I can barely walk. I have no insurance or job. I had to move back in with my parents so they can take care of me. I.e. wrap my feet, help me bathe, dump my bed side camode. I have been fighting with the government getting my disability for the past 2 years due to misdiagnosis. I WAS SENT TO 2 DISABILITY DOCTORS WITH LYMPHEDMA IN MY LEGS AND THEY EXAMINED ME NO MORE THAN 2 TO 5 MINUTES AND ADVISED ME NOTHING WAS WRONG.. WHAT A JOKE. THE DEFINITION FOR RECEVAL OF DISABILITY IS VASCUALR DISEASES OR LYPMHEDEMA. SO IF YOU HAVE LYMPHEDEMA YOU WILL QUALIFY FOR MEDICAL DISABILITY, MAKE SURE YOU GET A DOCTOR AND COPY EVERYTHING YOU SEND TO THE GOVERNMENT OR THE IDIOTS UP THERE WILL CONVIENTLY LOOSE YOUR PAPER WORK. I AM 39 AND WORKED FROM THE AGE OF 16 TO 37, UNTIL MY DISEASE LEFT ME CRIPPLED AND IN A WHEEL CHAIR. I CAN STAND AND RISE WITH WALKER BUT I CAN ONLY WALK A FEW FEET BEFORE I WEAR OUT OR FALL. I NEED MEDICARE AND MY MONEY OWED FOR YEARS OF WORK. I NEED A THERPYS TO HELP ME FUNCTION AND WALK, EVEN WITH A WALKER, SO I CAN LIVE A SOMEWHAT FUNCTIONAL LIFE. FOR ALL INTENSIVE PURPOSES I HAVE LIVED IN A LIFT RECLINER FOR OVER 2 YEARS. LYMPHEDEMN HAD ADVERSELY AFFECTED MY LIFE... IT'S DEPRESSING THAT WE CAN FIND A CURE TO MAKE A MAN HARD (VIAGRA) BUT WE CAN NOT FIND A CURE OF LYMPHADEMA OR VASCULAR DISEASE. PEOPLE WE NEED TO WAKE UP AND FIND A CURE FOR THIS DIBILITATING DISEASE

THANKS FOR READING MY RANTS...MELISSA

[missy98writer]

On or around July 2005 I got disability. As of Feb 28, 2009 I get both Medicade and Medicaid or Sooner Care of Oklahoma.
I heard about the Advantage program offered to people living in Oklahoma who have Medicaid or Sooner Care. Now on Mon, Wed & Friday's from 8:45 am until 2:00 pm I have an aid from Ghirling Home Health Care comming to my home and helping me out with all my needs. The aid is also my sister-in-law, Crystal, she is married to my brother, Mike. Crystal helps me take a bed bath every Mon, Wed and Friday, washes my hair once a week, washes, missages, puts on prescription strength lotion and wraps my lower legs. She wraps both of my legs with Ace Lymphadema wraps, she wraps from my toes up to my knees. The Ace wraps keeps my legs almost normal looking. The right is about one-and-a-half times bigger, but my left leg is now normal size, except for very dry skin. No leg hair grows on both my legs in my Lymphadema area: That area is from the tips of my toes up to my knee caps. I don't cover past my knees because I have a bad right knee and sometimes my left knee swells. My right knee is messed up from an old injury when I was a kid. My sister, Suzanne, and I were on a four-wheeler. She was driving too fast. I was the passenger. She went down a steep enbankment and rolled the four-wheeler, me & her on my right leg.
I have both Primary Secondary Lymphadema due to a mis-diagnosses of PPH or Primary Pulmonary Hypertension for many years.
Always ask for many medical opinions when you know you have a strange or unheard of disease. A MRI or a Cat Scan is a two good test to ask for if a condition you have is a mystery. For many years my Lymphadema and PPH or Primary Pulmonary Hypertension were mis-diagnossed. Due to the mis-diagnosses I developed severe Lymphadema and I spent well over 99 days in two hospitals where I was on life support. Hell, I almost died from my PPH or Primary Pulmonary Hypertension.
I also have many food allergies; Lactose Intollerant, highly allergic to MSG and many chemical food preservatives found in most processed foods and in fast foods. I eat only Certified Organic fruits, vegitables and grains. My meat is Certified Organic too with no Hormones, Steroids or chemicals. The meat is grass fed or organtical grain fed with zero chemicals. Recently my family and I purchased a 1/2 of a cow from a farmer with Certified Organic beef. We are waiting for the farmer to sent the hefer or cow to get it buchered. Until then we pay and arm & a leg to buy Certified Organic meat from the grocery store. I eat homemade food, no processed food, or even no fast-food. Over 8 months ago I quit drinking soda pop. I drink water, 100% fruit and vegitable juices, lots of Cranberry Juice, Kool-aid, Organic Iced Teas, Fruit Slushes, Sonic Slushes, Lemonaid and Limaids. But I stay away from carbonated drinks made with corn surup. If I ever in the future drink soda pop it will be made with 100% cane sugar and no corn surup.

Thanks,

missy98writer

[missy98writer]

For many years my Lymphedema and PPH or Primary Pulmonary Hypertension
was misdiagnosed. Here is a copy of the letter I sent when trying to get Medicare:

To Whom It May Concern"
I would like to explain why I needed disability and my experiences with the two doctors I was sent to.
The two times I was required to attend the two doctors I was sent to, I could not even walk. The first doctor's visit my family and I called Edmond Fire Department to help me in and out of my parents small car. I have no wheelchair, but I do have a walker which I managed to buy with my little money. My parents went into the doctor's office to see if they had a wheelchair for my use to roll me inside the doctor's office. Once inside the doctors office they didn't have a wheel chair for their patients to use. My parents brought out a rolling office chair for me to get inside of the doctor's office. It took us twenty to thirty minutes to get me out of the car. I was aided by my parents and a few nice strangers who helped me in the doctor's office. Due to dependant edema, several falls, and my motor skills were not developed as a child , a form of Cerebral Palsy, I am unable to walk. After the doctor's visit, when I was brought home I had to call the Edmond Fire Department again to help assist me into my parents home and into my bedroom. Recently my friend, who's handicapped husband loaned me a wheelchair so I could go visit the second doctor with whom I'm required to see to get Federal medical disability. Before I describe the second doctor's visit, I would like to complain about the first doctor's visit. The female doctor assumed I walked in her office when I did not! She totally ignored my lower legs, ankles, feet and toes that were bloated 8 to 10 times their normal size. My right foot alone due to edema weighs about 10 to 15 pounds and is 42" around. I am enclosing a picture of my legs, ankles, feet and toes to prove I cannot walk. I am unable to get any employment. How can you expect someone who has to use the fire department to get in and out of a car just to get to work. I can't even take care of my bathroom needs, or to wash myself without help from my parents, who are my primary care givers. I can't do anything for myself, my mother or dad has to help me with everything.
Now, my complaint about the second doctor. He looked at my ears, hit my knees, elbows, and from a very brief 2 minute exam, the older male doctor had the nerve to diagnoses that I had no neurological problem. I do have a neurological problem diagnosed as a child: Cerebral Palsy. A CAT Scan and MRI is needed and required to prove my neurological problem, not a two minute exam! I was diagnosed with small motor muscle very under developed, called Cerebral Palsy, as a child. I have developed edema, high blood pressure, bladder and bowel problems, thyroid problems, and my small motor muscles are underdeveloped, also called Cerebral Palsy. I have to use a chair side commode or toilet just a few inches from my motorized lift recliner chair. I fall every time I attempt to stand or even try to walk. I am the perfect candidate who deserves permanent medical disability from Medicare.
The two doctors I went to were a joke! At neither doctors offices was I able to come into without a wheelchair or a rolling office chair. My lower legs, ankles, feet, and toes are very large and bloated. My feet and toes are so large that I can not wear socks or shoes, and they still are very large and bloated. I can barely lift my feet and legs up in the air. They are so bloated and large that I'm unable to walk let alone stand longer than two minutes at a time. No doctor that I've been to can tell me or diagnoses why my lower legs, ankles, feet and toes are bloated & large. I am enclosing a medical envelope I have along with several photographs that my family has taken. Please reconsider allowing me to get permanent medical disability. And thank you for your time.

Sincerely,

Melissa C.