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I Have Idiopathic Edema

A Idiopathic Edema anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Idiopathic Edema. You're not alone. 20 People

    Just Don't Know

    Well, i'm 16 i've had this since i was about seven. Back then the doctor thought i was allergic to dog hair, and then milk, and then sea food. but, i know my body and i knew it wasn't any of these.  I went to lubbock tx hospital and met a doctor that said it was idio edema. she...
    kattie13 kattie13 16-17, F 1 Response Jan 20, 2012

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    Anyone In The Northeast US With A Good Dr That Treats Idiopathic Edema

    i can't find any good docs. i live in pennsylvania. at this point, i'll go anywhere to see a doc!
    mrg214 mrg214 31-35, F 3 Responses May 15, 2013

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    I, too, had all the "normal" kidney,

    liver, heart, lung & thyroid function. Five different doctors had no idea what it was and merely suggested compression garments and low sodium diet. I am not overweight, not diabetic, and not depressed/anxious either. As a result of the edema, my legs began to cramp when I...
    ldrakecole ldrakecole 46-50, F Dec 11, 2013

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    Idiopathic Edema

    I've been dealing with this for approximately 2 1/2 years now. I can't take it anymore. I've had up to 35 lbs of extra fluid on me and doctors just don't care, tell me to deal with it. I cannot and will not go on like this. Does anyone have any stories of what's helped?
    mrg214 mrg214 31-35, F 1 Response Sep 25, 2012

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    Hi!! I am new here and not sure how this works!

    !! I'm looking for anyone who can tell me any kind of treatment that works for idiopathic edema!!! Any help is welcome!!!!
    carlalynnrn carlalynnrn 36-40, F Dec 11, 2014

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    Alive And Swollen

    I am 43 years old and was diagnosed with breast cancer this time last year.  I went throught chemo and radiation which were completed in May.  A few months ago I started putting on weight and swelling.  My kidneys, liver and heart are all ok.  Most of my...
    burkewife burkewife 41-45, F 2 Responses Oct 7, 2009

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    Idiopathic Edema

    It has been a year and a half since I was diagnosed with ideopathic Edema. It is troubling because I get swelling on my lips, face and head. I started taking Benedryl to help the swelling to go down. After I while I thought that it disappeared and I was wrong. Now I take an...
    CurtisPhillips CurtisPhillips 51-55, M Jun 9, 2013

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    I Am The Stay Puff Marshmallow Girl....

    It's been between 15-20 years since I started to suffer from Idiopathic Edema. I was sent to Endocrinologists first, who miss diagnosed me with Polycystic Ovary Syndrome - I was sent to Nephrologists who started out with 24 hour urine testing, blood work, and stating that I had...
    Sabrina41 Sabrina41 41-45 7 Responses Apr 1, 2011

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    I have lost more babies

    than I can even count now. Twenty-two (yes 22!) babies have lived in my womb and have died. Each and every one of them have taken a toll on my heart, my marriage, our finances, and our lives. I want nothing more than to find a cure for this issue and give my husband a baby...
    CassiKaehn CassiKaehn 41-45 3 Responses Feb 14, 2014

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    Stupid Edema!

    Has been bothering me for awhile.  I was trying to decide if I was really that fat or if it was swelling.  When I work I wear special socks for my plantar fasciitis.  When I wear those socks from the ankle down my feet are totally normal.  When I don't wear them my feet puff...
    katnipkitkat katnipkitkat 41-45, F Jul 26, 2011

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    Related Experiences

    I am 20 years old and recently been diagnosed with IIH currently in hospital after a week of being very poorly. I am 5 foot 5 and weigh around 10 stone (62kg) Started as I went to...
    elliemaystatham elliemaystatham 18-21, F Feb 14

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    In July 2014 this all seemed to start with a bad summer cold, which I only mention because I can't help but thinking it all started with a virus. Lots and lots of other stressors...
    LauraOLeary LauraOLeary 56-60, F 1 Response Feb 16

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    I have had Rosacea since I was 19. I have been to a dermatologist once. I am 31 now and my Rosacea is ten times worse than before. My nose and face are always swollen, skin greasy...
    Mulhollandrive Mulhollandrive 26-30, F 6 days ago

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    So does anyone here have other "issues" besides MS. I have: Migraines Idiopathic thrombocytopenic purpura Diabetes
    DaveShaved DaveShaved 46-50, M Feb 8

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    I have always cherished the idea of love; of having someone that you love so much that they bring out the best traits in you and they make you want to become a better person. I...
    sammymater sammymater 18-21, F 1 Response 14 hrs ago

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    It's 12:30 in the am. It's a cold evening but in a tolerable and comfy kinda way, so I decided to forego wearing a jacket and just went outside wearing old, ripped, denim shorts...
    trAnSyLvanIanconcuBinE trAnSyLvanIanconcuBinE 26-30, F 2 Responses 3 hrs ago

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    Last night I was looking over some my old stories, one in particular very popular and most viewed post under: I am a Lesbian... I noticed I really needed to clean up the...
    bemyvalentine bemyvalentine 56-60, F 2 Responses 2 hrs ago

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    I've been dealing with this for over 10 years now, most of this time I have been in a dark hole. It went as far as me losing all hope and even forgetting who I am, who I used to be...
    lily449 lily449 18-21, F 1 hr ago

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    I've been dealing with this for over 10 years now, most of this time I have been in a dark hole. It went as far as me losing all hope and even forgetting who I am, who I used to be...
    lily449 lily449 18-21, F 1 hr ago

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    I've been dealing with this for over 10 years now, most of this time I have been in a dark hole. It went as far as me losing all hope and even forgetting who I am, who I used to be...
    lily449 lily449 18-21, F 1 hr ago

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    Please read: It's kind of sad to me when someone needs a partner to have meaning or worth or reason to live. It's nice to have someone but why make them your everything? To me...
    dashuria dashuria 16-17, F 3 Responses 13 hrs ago

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    I have been uni this girl for a while, when I finally manage to win her over and she admits that she really go something for me, I suddenly lost interest? I have no idea what...
    aDesperado aDesperado 18-21, M 2 Responses 11 hrs ago

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    part 4... One time the girl and polar bear saw each other. So the girl asked him "do you love me?". and then polar bear said "i care for you...", "I'm asking you if you love me...
    KarenIsMyName KarenIsMyName 18-21, F 4 Responses 10 hrs ago

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    Hi everybody! My name is Maria and I m writing from Italy, so I m sorry if my grammar or vocabulary isn't that perfect. I found your online community and fought: I have to try! In...
    Ciminiera95 Ciminiera95 18-21, F 1 Response 7 hrs ago

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    My neighbor's house is only about 15 feet away! My wife only wants sheers on the windows downstairs because she says full curtains make her feel "closed-in". Usually, when I'm...
    closetedcd60 closetedcd60 61-65, M 2 Responses 4 hrs ago

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    I'm 14. I have had this medical problem since I was about 7-8 year old maybe i had it before but i don't remember that age good.I always pulled hair from some part of my body when...
    browndeadeyes browndeadeyes 13-15, F 4 hrs ago

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    Normal hair people dont understand our problems. there was only 2 times i tried straightening my hair last year. It didnt work out as i planned. But these are 10 things of the many...
    WhiteRice14 WhiteRice14 18-21, F 1 Response 51 mins ago

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    Many people have seen me naked, but only a few were by accident. I used to have neighbors, a lady and her daughter, that didn't know how to knock on a door. They would just walk in...
    ubername ubername 26-30, M 5 Responses 14 hrs ago

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    I have always struggled with memory! It's only gotten worse as I got older. I can only remember one thing at a time and that is a struggle. I will tell myself it multiple times in...
    1lonelydaisy 1lonelydaisy 41-45 1 Response 13 hrs ago

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    its a joke hein?! haha ironi ... have oher things to do in my day than to answer to stupid question haha by the way have a nice day
    laulala laulala 18-21, F 1 Response 11 hrs ago

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    I have a woody!!!!(*Waves hand laughing*)JUUUSSSSTTTTTT Kidding!!!!!!(*straightens face to serious*)no seriously!!!See.. i have a woody!!!
    nocool nocool 41-45, M 2 Responses 8 hrs ago

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    He's amazing, he's kind, he's loving, and sweet. He is perfect in my eyes, and his looks are a huge bonus. I just met him and I have fallen for him. He accepts me for who I am and...
    idontknow1921 idontknow1921 16-17, F 7 hrs ago

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    I have a crush on a very special guy. But I am far to nervous to tell him! I guess it will just have to be a secret.
    TheNameIAlwaysWanted TheNameIAlwaysWanted 16-17, T 1 Response 6 hrs ago

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    Does anyone have or dealt with schizophreniform? Mine has lasted 2 years but apparently that's not schizophrenia. I rarely hallucinate. But i have what I think might be a delusion...
    Ifeeluberish Ifeeluberish 18-21, M 6 hrs ago

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    This shirt is still pretty roomy for now, but you can still tell what's underneath it. I'm surprised no one has noticed, and if they have they haven't said anything
    rubberduxk rubberduxk 18-21, F 3 hrs ago

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    It's a blessing and a curse ... I look great in skirts and they are always slender and sexy however when I'm in a car I have to have space for my legs and some tables are so low I...
    FoirfeGirl FoirfeGirl 18-21, F 3 hrs ago

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    I have much to do but have no motovation to do it.
    shorekid shorekid 18-21 27 mins ago

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    I got mine about 10 years ago now it Is my Fraternity Letters on my right shoulder. I have thought about getting an eagle on my back as im an eagle scout though never seem to have...
    Cargan2016 Cargan2016 31-35, M 18 mins ago

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    I don't know what to do about this. It just feel as if everyone is so much better than me in terms of intelligence, awareness, creativity, knowledge and so many other aspects. What...
    DarkLoser DarkLoser 13-15, F 4 Responses 14 hrs ago

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    I've liked you for a long time, and irony is we both know this. But the fact that you did not budge an inch to that news is enough of a hint to me, and I'm not going to wait around...
    AngelWink AngelWink 18-21, F 14 hrs ago

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    Especially if your my friend and have your friends come over for like a party or something
    spaz840 spaz840 18-21, M 1 Response 14 hrs ago

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    Things I wonder: How would I look if I was a different race? What if a different race was more dominant than white people? What animals/people/places in the world haven't been...
    dashuria dashuria 16-17, F 13 hrs ago

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    I feel like such an insomniac lately. I just have so much on my mind and no one to vent to. My son's father I live with him, he can fall asleep at the drop of a hat, and besides...
    Alicia921 Alicia921 26-30, F