Where do you begin to get a diagnosis?
List ALL your symptoms no matter how minor they seem. Include aches and pains that seem to come and go for no apparent reason.
Get a body sketch and mark any place you have a lump, bump, or sore place.
Go to http://members.tripod.com/dercums_data/brorson.html
Either print this article and take it to you doctor or give your doctor the web address.
Hope this helps.
Look up www.lipomadoc.com Karen Herbst
I don’t know how she manages to deal with so many patients, but she is (IMO) the “Gold Standard” for Dercum’s diagnosis and treatment suggestions.
She really (I think) needs interested people to helper out in some way, so she will have enough time to actually LIVE and DO HER RESEARCH while everybody with a painful lump zero’s in on her location.
The BODY SKETCH idea is a good beginning for something that, with the help of some GOOD computer 3D software, Medical imaging software and records, hopefully a 3D scan of the exterior of the body at different points in time, the sketches (because conventional medical imaging MISSES most lipomas near the body’s surface) and A HIGHLY EXPERT, HIGHLY DEDICATED SOFTWARE PROFESSIONAL WHO HAS AN INTEREST IN THIS SUBJECT.
Since the imaging of lipomas is so bad, records of lipomas removed (their size, shape, location and whether or not they are angiolipomas, and lipomas that happen to ‘hide’ under other lipomas), not to mention the various amorphous fatty tissue flares and lipoma (their size and texture and how much pain they cause ) flares, and even if only for one person, a time-scaled “movie” of the person’s body and its known and measured, or known and not measured lipomas and other seemingly related problems over time, then we could get at least the beginning of a 4 dimensional or 5 dimensional (3D over time, and possibly pain level correlate) living computer model of what actually happens inside the body of a Dercum’s patient.
There’s no computer wizardry needed, just competence and commitment, and a patient who is willing to submit to the inconvenience of documentation and imaging of the body (and it’s ‘person’ as it is affected by the disease as it runs its “progressive” course.
I finally saw a doctor who could get rather nice ultrasound image of some of my lipomas, and it was really the first time I saw an easily understood picture of one little area of my own body, which is fairly wall covered with lipomas and ( what’s left of) the indications of the hundred or so that have been removed over many years.
Having tried in my spare time, which really is not much time, to pursue such a project (which could also be of use in many kinds of medical history applications for progressive diseases)I realize it cannot be done without a group of interested people with the technical and medical competence needed to produce “believable” results and submitted as a case study of a method in development of “historical 3D medical imaging data mining”, maybe some people with credentials and interest could actually get some funding for the amount of access to software and working time for the experts needed to implement a project of this nature.
This a bit much for a “comment” but having thought about it for years and without any real progress in implementing it, I thought now as good a time as any to invite interested people to consider this idea as a possible diagnostic and “discovery” tool related to how Dercum’s disease manifests itself in people, and how pain levels might correlate with tumor growth and location and etc etc etc.
I hope somebody understands the essential idea of what I am proposing, and that the right people with the right credentials COULD get grants to put a project like this together.
—unless it has already been done and is being applied in another field of medicine,
in which case we dercum’s people could just adapt it to our special situation and finally gain more robust knowledge of the “big picture” as well as the biological science now being studied in connection with how pain is generated by the biochemistry of Dercum’s on a cellular or tissue level.
Good luck reading this, whoever’s out there, and please if you have any interest get in touch with me. It’s the people WITH Dercum’s disease who have more than an intellectual curiosity about how it works and what can be done to manage it. Maybe some of us are also trained in aspects of medicine, science or engineering and can form a study group to help the poor overloaded doctors trying to do the work equivalent to, say, cancer research with no budgets, grants, teams or experts, etc.
So if you are out there, and have this medical problem or simply see a good project in my short treatise, please show yourselves!
And Happy New Year to all!
SF