Dercum's Disease

Dercum's Disease
#1

Hi Hiedieluwho!

Thanks for your speedy reply. I truly appreciate it. I have already visited several Internal medicine doctors but none of them have any clue about the DD. I’ve had the DD since 1977 but it wasn’t diagnosed until 1984 by a oncologist who sent my biopsy to Columbia University in Manhattan.

It seems that no one knows of any doctors who deal with DD patients in the NYC area…not even Columbia University. I’ve had several tumors removed only to return. Therefore, from day to day I live on prayers because that’s all I have. I have a question: A fatty polyp has grown in my gallbladder and I believe it’s part of the DD. Do you know of anyone who has had the same thing happen to them?

Thank you for contacting me.
Beanie

#2

Hi beanie,
I have one inside my stomach, it is located where my stomach empties into my intestines and is attached to both my stomach and intestines. If I were to have it removed, I would be left wearing a colostomy bag and that is not an option unless or until it grows to the point in interferes with the emptying of my stomach contents.
I wish you luck with your gallbladder problem, more than likely this is something that will need to be removed as the pain increases. I had my gall bladder removed several years ago, it got so bad that I could not eat without throwing up and the pains were horrible. The surgery made a big difference but now I wonder just how long I have had this monster inside my stomach and how much that had to do with everything.
Your friend,

SylviaS

#3

How did you find you had lumps inside your organs? I ask as i worry about this constantly. I feel I dont get anywhere with the specialists enough to give my conserns. Do i have to wait until i have problems in these areas before they are diagnosed in these areas. I still have tons of questions and need them answering…lol

#4

The lump inside my stomach was found when I had a tube with a camera put down my throat to take photos inside my stomach, I have forgotten the name of the procedure; maybe it is endoscopy I think that is right. My doctor ordered this test because of the pains I was having, I would not advise having these kinds of tests done just to see if you might have a problem but you should be asking your doctor those kinds of questions.

I know how worrisome it is, especially when you are new to DD. I have learned, as have so many who have helped me to learn, that obsessing about it will only make you feel worse. Try to make the most of each day, keep busy with something to distract the negative worries and thoughts. You will find there are good days and bad days, make the most of the bad ones and cherish the good ones. That is the lesson I have learned and the best advise I have to offer to you. It is what it is and will be what it will be, we just have to find ways to help us deal with it.

I know that does not sound very comforting right now, you sound desperate to find answers and we all want to help you but all we can really do is be here for you and offer our best support. I hope I have helped to some degree, wish I had more answers for you.

Your friend,
SylviaS

#5

My gastroenterologist called that test an EDG. I don’t know what it stands for, but I would not have the camera put down my throat out of mere curiosity either. All they found when I had mine was a very raw stomach from living on ibuprofen.

Pamela

#6

good advice … thanks
i take ibrofen regular as prescribed. lucky so far … fingers crossed it never happens…i dont have problems with my stomach so wont request that test unless its really necessary.

again… thank you