Discussions By Condition: Medical Stories

Idiopathic edema

Posted In: Medical Stories 0 Replies
  • Posted By: Momof12
  • April 15, 2011
  • 08:44 PM

In 2007 I was a healthy, happy 41 year old who weighed 125 - 130 pounds. I am 5'5". I walked everday 5-6 miles. I wore a bikini on spring break trip to Florida. Around July of that year I gained 35-40 pounds of weight with in 6 weeks. My body just kept producing all this fluid. I went to numerous doctors, from internests, to endocronologists, to neurologists. I even went to Mayo Clinic and UofM. only to hear the same thing you have Idiopathic Edema. U of M did find a nodule on my throid that grew very fast and eventually led me to have my Thyroid taken out. THey also found that I have a pituitary tumor, adenoma. BUt it is too small to operate on. I have had numerous MRI's, blood drawings that show all my cbc is normal. I have been on so many diurectics a day, anti depressants, and thyroid medicine. It has now been 4 years and I now weigh 190 pounds. I am so swollen I can't breathe. I asked my endocronologist "so you are telling me I am going to be a statistic, you don't know why I am gaining all this water weight so I will die in a few years of Congestive heart failure and that is what you are going to write it as. Not that you or any other doctor don't know why I am gaining all this water weight just that you don't know and will call it Congestive Heart failure, because you and I both no I will die of this fluid." The doctor had nothing to say except "we just don't know what is causing it"

I went home and cried, I am a mother of 12 kids and 6 grand kids, and I am going to die in a few years if no one figures out why. I WILL NOT EXCEPT THIS AS MY FATE!!!!!

That night I prayed and went online asking GOD for what will help me, In that instant I found a website on Wilsons Syndrome. I was shaking and thanking GOD for leading me to this site, it was me. In all my research on this ideopathic Edema I have never found this site.

Wilsons syndrome is a disease that starts out with a major stress in your life, it can be even giving birth or a child going to college. THat year in 2006 and 2007 I had alot of stresses. Now I can see why my body went all hay wire. Your thyroid plays a big role in stress. I needed to take my temperature 3 times a day. If your temp is below 98.6 then it could be Wilsons syndrome. My daily body temp is 95.2, the trick was finding a doctor who knew about Wilsons syndrome I happen to find an excellent doctor.

I am on my first set of Wilsons syndrome medicine and am starting to feel like myself again, the water weight will take time, but I can see my ankles and feet. Please let people know about Wilsons syndrome, if I found this sooner I could have prevented 4 years of pure H.... I used to watch your show for a sign of HOPE, I needed HOPE so that at the age of 45 I wouldn't be a statistic. Most doctors I don't think know about this syndrome and they ALL should be trained on it, I know there are more people besides me who probably have this, but just believe what their doctor tells them and then they die of Congestive HEart Failure.

THanks for looking at my story, I will keep you posted on my condition since I am just ending the first series of medicine.


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