Discussions By Condition: I cannot get a diagnosis.

Need diagnosis of Adiposis Dolorosa / Decrums

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: Bornsickie
  • August 26, 2008
  • 02:52 PM

I have been seeing Med Pros for almost 18 years for large lumps in my neck/shoulders to no avail. Most Dr.s were intrigued by them but, always ended up telling me ... its nothing to worry about.
I heard that for the last time when in Jan of 07 we lost our health insurance.
Dr.s would measure them, press them, wiggle them around... one Dr.....
opened the exam room door and yelled down the hall to another Dr.... hey, come and see the size of these lumps! I was mortified! I have been referred to as an enigma my entire life due to constantly being sick and these lumps just add to it.
Since loosing my insurance I have spent countless hours on the web and in libraries looking for all my symptoms.... and trying to put 2+2 together... because no one else will! Not even Dr.'s.
My history is extremely long and all ties into Adiposis Dolorosa / Decrums disease showing 3 types of swollen lymph nodes at various locations on my person. Exactly which type they are will have to be defined by a specialist.

Vital to the importance is also..
An enlarged liver and spleen (5 years now -which was ignored by my PCP).
I loose Potassium at the drop of a hat. I do take Potassium everyday.
The last test was Jan 07. Range of levels was: 3.5-5.5 My level: 3.5 and thats with taking Potassium everyday.
This has always been ignored as well. Even though it has happened 7-8 x's in the last 6 years.

To make a very long story short.... I have had help in researching alot of my problems over the past few years and with the help of other folks looking for help in other directions.. was led to Adiposis Dolorosa or other wise know as Decrums Disease.

Like i cited earlier... i have a host of other problems that play into this diagnosis as well and have been treated in the past as separate problems.. many are related to Decrums.

I am between a rock and a hard place here. I need to get this diagnosis so I can apply for SSI. Without this diagnosis... I can not get the medical help I so desperately need.
There is another side of Decrums it is called Madelungs Disease.
With Madelungs... it can cause sudden death. You may have nodes that are so swollen they can cause a heart attack, collapse your lungs and a host of other problems as well. I have lumps under both sides of my ribs, neck/shoulders, ankles, wrists/hands, belly button, nasal passages and both sides of my tongue.
I desperately need a diagnosis.
Can anyone help in any way?
I would deeply appreciate it.
I live in Fl.

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2 Replies:

  • I happened to be thumbing through a new dermatology book today, and I saw a photo that looked like what you describe. Has anyone thought about Rosai-Dorfman disease? Slpeen & liver enlargement are associated with it. Try here: http://children.webmd.com/rosai-dorfman-disease
    aquila 1,263 Replies
    • August 28, 2008
    • 06:35 PM
    • 0
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  • Well, well, well, this is very interesting....I am checking out many sites concerning this disease. It mimics Decrums in allot of ways! Or vise versa. I do find some differences however: My lumps are very painful. Some of the sites state that rarely are nodes, visible lumps, protruding above the skin. The ones in my neck have gotten pretty big. Up to 3 inch tall and once reached almost 11 inch long at one point.Though there are possiblities to this disease! However; this diag. could be for my insides/internal. Since, there has not been any x-rays, MRI's, Ct.'s etc on them and an extensive work up there is no way to tell at this point. But, it will remain a possibility. So, far I am still sticking with Decrums for the most part... this other disease could come into play... when I continue my research. Thanks so much for contacting me. It provides me another avenue to explore... perhaps bringing me closer to a diagnosis. Thanks for stopping by and offering some information. It is deeply appreciated.
    Bornsickie 2 Replies
    • August 29, 2008
    • 04:38 PM
    • 0
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