Updated Notes on Dercum's Disease
(Adiposis Dolorosa)

Notes:

June 11, 2002

Several months ago I had yet another CAT scan for my abdomen and once again, the doctor told me everything was fine. I had a witness with me when I went to get the report from the doctor. (I always suggest that you have a witness and/or a tape recorder with you when you see a doctor). At that time he did not give me the report and also neglected to tell me of certain important results from the scan. He actually said my liver looked good. He surprised me that he did not order some different tests or procedures regarding my pancreas since my family history is riddled with pancreatic and liver cancer (mother, aunt, maternal grandmother). He asked me if I had had an octreoscan? I said I hadn’t. The octreoscan is a nuclear medicine procedure that requires an injection with a radioactive isotope and then taking pictures of your body for one or two days. After more that a week I hadn’t heard from the doctor and I called him to find out the results. At 9:00 that night he returned my call at which time he said "You were right". There is a mass on your adrenal gland. I said "That’s no surprise to me" and asked about my pancreas. He said my pancreas was fine. To this date, I still don’t believe that because I have since found out that the octreoscan, which is looking for somatostatin secreting tumors does not reveal exogenous pancreatic tumors. This means if the tumor is on the outside of the pancreas, it will not show up on this test. The doctor said "Now, if someone is telling you there is nothing wrong, you can show them that there is". Then he asked if I had a favorite endocrinologist? I said that I had seen several, none of which were my favorite. Now if you look under adrenal tumors, you’ll find that they can affect every bodily function, including Cushing’s disease, hypoglycemia, blood pressure & blood sugar, and thyroid function.

Adrenal tumors can be highly correlated with carcinoid tumors, phechromocytomas, and neurofibromatosis. In some of the older Dercum’s articles, some of the doctors labeled these large massive tumors neurofibromatosis. Obviously the coincidence is no coincidence.

One of the people who currently has Dercum’s has recently had several tumors removed and the doctor is calling it neurofibromatosis. If you can find a doctor who even knows what neurofibromatosis is, which is a neurological disease, which most neurologists are not intimately familiar with, you will have an easier time getting surgery. The tumors will be seen for what they are, and not that you are fat and lazy.

In my opinion, if you have a tumor on a gland it will probably cause an effect on the functioning of that gland, whether it is benign or not! In certain animals, if there is a tumor in the pancreas there will be one in the adrenal gland on the same side of the body. Look at a picture of the nerve paths and you will see they are on a similar path. Many of the people with Dercum’s also have hypothyroidism. If you also have a problem with your adrenals, and don’t know it or treat it at the same time, the treatment for hypothyroidism will aggravate both conditions.

Another note about adrenals – Addison’s disease, which is an adrenal disease where the gland stops functioning use to be thought to be caused by tuberculosis and/or fungal infections. When I presented this to a doctor recently, he said "Oh no, that was the old way of thinking about things – it’s an autoimmune disease". I find much of the issue of autoimmune disease laughable - if you don’t know what causes the inflammation nowadays, it’s relegated to the area of autoimmune disease. Simply put, doctors are not looking for an infectious agent. Who, in this day and age, is looking for fungal infections or tuberculosis when they remove a tumor from the adrenal glands. Tuberculosis in this country is at record levels in certain parts of this country and some strains are not treatable, due to the virulence of the disease. Several people who have previously had active tuberculosis have come down with Dercum’s disease.

December 9, 2001

Maureen is out of the hospital.  The only real medication she got was a pain pill and a sedative in the emergency room.  The doctors did some meaningless tests, said everything looked OK, the tumors weren't tumors - just fat.   What a waste!  (entry by Don).

December 7, 2001

Most dercum's patients will die.

I'm convinced that dercums disease is a constellation of symptoms - most notably recognized by the painful lipomas.

At this writing I am in the hospital emergency room because after a week of not being able to get out of bed for anything, including the toilet, and not being able to use the bedside commode, because a new crop of tumors had arrived and the pain was unbearable. I could not stand because my feet had swollen and my right foot was twice the size with enormous new tumors on the ankle and back of the foot. My second toe on both feet have become clubbed, hard, and the left one was purple with a streak of red going down my foot from my toe- I assumed I was having a gout attack. My right foot had deep stabbing pains -which usuaily is a sign of tumor formation. Additionally my left thigh kept growing new tissue, thickening the size of my thigh. Today my left knee became excrutiatingly painful as I think the tumors are now growing on my kneecap. Additionally the tumors on my abdomen especially on the left side have taken a large growth spurt. They wrap around my side to my back, they sting and burn, they're up and down my ribs. They feel like the usual grapes and I wonder if they, or whatever causes them, have not eaten through my intestinal wall, pancreas, spleen, gall bladder, muscles. I woke up in the middle of the night to a shaking feeling, probably from high insulin or low blood sugar. when that happens, you can feel the tumors palpably grow.

 

August 15, 2001

A man with Dercum's Disease called me a few years ago. He said he was dying.  He was about to have hospice come in.  He was from the mid-west of America and had been going to a Veteran's Hospital. His doctor, who had been a corpsman during the Viet Nam War, came back from the war and became a doctor.  He, the doctor, said the tumors were caused from dioxin that was used in Agent Orange.

Now dioxin is used a lot of things - including pesticides, herbicides, fungicides.   They have even been in tampax. 

Many of the Viet Nam Veterans suffered from very weird diseases, were told they were crazy and many have died premature deaths.  Some grew tumors all over their bodies, some got terrible arthritises, many of their children and spouses got sick.  Many of the children who they had after the war had attention deficit disorder, birth defects, the list goes on and on.  These same men had normal children before they went to the war.

 

March 7, 2001

Hey everyone -
I was rereading the original Brorson article about Dercum's Disease - the one where they go into the stuff about Dr. Dercum, blah, blah, blah. In the article, Dr. Brorson talks about Fatty tissue histology shows a slight accumulation of perivascular lymphocytes and plasma cells (24, H. Brorson, B. Fagher, U. Stenram, unpublished data). Since the picture is not viral it is uncertain how these findings should be interpreted in this case. Another study suggests the occurrence of a metabolic block in the synthesis of lipids

I then looked under pervascular lymphocytes and found some interesting web-sites - here they are:

INTERNAL PARASITES OF RABBITS

Hemoflagellates (a type of parasite)  

these have to do with parasites and other infections. please read them.

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Reserved for future notes:

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For comments, discussion or support about this disease, please contact
Maureen
Camarillo, California

Last updated 18 Nov 2003

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