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j'aimerai avoir un contact avec des personnes ayant cette maladie douloureuse et handicapante, peu connue. Je ne supporte aucun traitement et n'ai à ma disposition que des "petits myens"! Merci de me répondre.

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Oedeme ideophatique.
Hello, i hope u understand english! My name is Carmen and i am from Bucharest, Romania, i am 28 years olf and i think have same problem like u, since many years i am suffering of this strange sindrome, oedeme ideophatique. I understand french but i am not able to talk and write it yet, so i really hope u can understand what i write u. If u want u can answer me in french.
Untill recently i didn't not even know this sindrom has a name. Everything started some years ago when i kept a very tough diet in order to loose weight in a short time. After i finished that diet and i started to eat normally again i began to make this oedem, first in the morning when i wake up with my face very swellen ( mostly around the eyes) gaining weight during day time because all the water i drink it acumulates under my skin so that in the end of the day because of gravity my legs get very swollen. Years ago i used to go to so many orders, they made me analises for kidneys, heart and liver and everything was ok, they didn't find any explanation for my oedem. Desesperated i began to take diuretics. But unfortunatelly diuretics resolv problem for the moment only and when te efect passes same oedem reapper. So resigne and tired of all doctors who didn't know what to tell me, i used to take diuretics allmost dayly and so it became everything a unfortunatly circle.
Some days ago( after some years of resignation ) i started to search again on internet to see if i can find new information aboute this kind of oedem. I found out that finally this has a name and is called ideophatique edems. I also find out that in the case of diuretic dependence it is absolutelly neccesarry to stop takeing it and after 3,4 weekes the body will readapt to te normal again and the oedem will dissappear. I can give u the link in french and english links also where u can see more informations: http://www.sfdial.org/f2n/pro/Oedemes/oedidiop.htm
http://www.wdxcyber.com/ngen17.htm
http://www.medicinenet.com/script/main/art.asp?li=USA&articlekey=12699&page=7#idiopathic
after i red all this new informations i stopped since 1 week taking the diuretics. My body had a very strong reaction as i expected i made edema all overy my body ( i think 3,4 litters of liquide ), i have head aches and musculaire paine and offcourse the cosmetic problems as the oedem is also on my face especially in the morning. I am waiting to see if after 3,4 weeks my body will began to recover as they say.
If u want to write me and share ur experience u can make it at

Thank u
Carmen

Portrait de arsinoé
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Hello, I know my illness very well. Because I am 69 old and I am ill for 53 years! I wait for 26 years to know this ill !...I taked a diuretic (aldactone) for 10 years (1976-1986) and progesterone for 12 years (1979-1991) and much rest (is very important). I had very heavy crisis with much oedem, pains,vomitings,difficult respiratories and comatose condition. And now these crisis are finished, ouf ! But I cannot take medicaments. I have 3 massages by week, I drink G5 (silice) is good to diminish oedems for me. I have magnetic fields and much rest. No warmth.
Can you ask for test of permeability, my mine is 20%. You must have a hyperaldosteronism.
Sincerely
Do you know gingko biloba ? I cannot take it but it is good for you perhaps.

I forget to read your e-mail, excuse-me.

Portrait de arsinoé
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I I send a mail. Did you get it. Arsinoé

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yes i red ur e-mail and also replay to you. Thanks a lot! i put there some questions if u can answer it will be helpfull for me! All my best wishes and good health!
Carmen

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