Discussions By Condition: Medical Errors

Rare Disease Adiposis Dolorosa aka Decrums

Posted In: Medical Errors 0 Replies
  • Posted By: Bornsickie
  • August 27, 2008
  • 03:07 PM

Hello everyone,
I believe I have adiposis dolorosa otherwise known as Decrums disease.
I have huge lumps in my neck/shoulders area, 4 lumps on the back of my head/neck, 3 lumps on my left hand and finger, lumps on both sides of my tongue, lumps on both knees, and ankles, one on my right wrist, and large nodes in my nasal passages.
With the hepl of a great woman we narrowed it down to the above mentioned disease.
The lumps in my neck/shoulder areas can swell up too 11" long and up to 3" tall! On both sides of my neck/throat and ears.
My problem outside of the medical ones is....
I need a Dr. to actually diagnose me! without this diagnosis, i cannot get SSI. Without SSI I cant obtain the help i desperately need.
I live in Fl. and so far have not been able to locate anyone to help me due to not having insurance. We lost it in Jan. 07.
I need this diagnosed.
There is another form of Decrums and its called Madelungs disease. With madelungs.. it causes sudden death. I really need to now if I have enlarged nodes in my chest. abdom. areas.
I also have enlarged liver and spleen which has been ignored as well.
Does anyone have any ideas on how to obtain this without going into so much debt we loose our home?
Any and all help, advise, comments are welcomed and appreciated. :eek:

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