A picture of Maureen holding a book

Maureen's Story - A Trip Through Hell

I love to write stories.

I love to write most everything, except for medical bills, which by now have totalled into the tens of thousands of dollars. It would be bad enough if I was getting better. Unfortunately, I'm not.

Dercum’s Disease is a very lonely disease. Bad enough when you are stricken with any disorder, but to have a disorder that no one or virtually no one knows anything about, has its own unique problems. Going from doctor to doctor, besides being financially wearying, wears you down in many other ways. You know you are in ill heath and yet, you can’t find any help. You call all over, make appointments with everyone you can think of and some you haven’t even thought of yourself. You drag your files and test results and everything associated with your case. In my experience, most of the doctors don’t look at any of it. At best, they read it or some of it, briefly as you walk in the door. So much for informed patients. In my experience with this illness, doctors don’t want you knowing more than they do. As one doctor said "you know more about this disease than the doctors do and we are threatened by that. We don’t know how to treat you" - treat you meaning administering some health giving protocol. When I heard these words, fortunately my ex-husband was in the room with me. We looked at one another and said this was another waste of money. So much for informed consumerism in the medical community.

My story, as others, starts when the acute portion or the severely manifest portion of the disease exhibited itself. Looking back, which seems to be a real key to this disease, I have had it for years, without knowing what or that I had Dercum’s Disease. Unexplained arthritic type pains, swellings, hypoglycemia, weakness, diziness - those are some of the symptoms well documented in the research of Dercum's Disease.

Interestingly enough, much of the early reporting talks about this being a multiglandular disease - but the research talks little to nothing about looking into the multi glands being malfunctioning.

Being a native of New York - A Brooklyn born babe, I don't let things go easily. So I am in the process of developing a questionnaire for people who contact me about Dercum's Disease after they have been diagnosed. Since the disease is MAINLY seen in women, but I know men who are also afflicted - and maybe by the same system, different hormones, I am asking very detailed questioned about menstrual histories - e.g., age of onset of menstruation, PMS, pregnancies, birth control pills, fertility drugs, endometriosis, cysts, irregular periods, absent periods. There seems to be a correlation between taking of steroids and setting this off. The gene may be there - or it may not - but it seems to set things fully in swing when some hormonal insult - and I'm including pregnancy, tubal ligation, PMS, birth control pills, pregnancies occur. SInce the disease seems to afflict women who have either just gone through the menopause, either naturally or surgically (via hysterectomy), it would behoove someone to look into the lack of progesterone and/or estrogen/progesterone balances in these women. Not one study can I find on this area of interest.

Many people have been tested for Cushing's Disease - but that is only one of the myriad diseases that can come from the Pituitary Gland and/or Adrenal Glands that are not working properly. The Pituitary Gland controls and keeps an eye on all the other endocrine glands. It seems most likely that there is a connection to the pituitary if doctors would look a bit further.

Another area of interest to me is that most people with this disease have either been or are hypoglycemic or diabetic - with Diabetes 2 coming on suddenly. As far as I can tell, none of the doctors in the papers I have read, have looked at the pancreas as being problematic. Doesn't control of blood sugar also have something to do with fat? Answer I have received from one doctor is that you would expect to have insulin resistance problems in obese individuals. My response is that all of the people are not obese to begin with - but virtual all have sugar or insulin abnormalities.

There is one good study out of Sweden that the fat in Dercum's Disease tumors or fatty deposits burns energy very differently than the fat form normal indivicuals without the disease or from obese individuals without the disease.

And what about this "lie" that the tumors or deposits don't cause pain? In the most primitive of the early literature, Dr. Francis Dercum - who named the disease, was a neurologist and said the deposits or tumors wrapped around or lay on the tumors. My God, one doesn't have to be a brain surgeon to figure out that that would cause a problem and "PAIN". Soimetimes the tumors actually displace the nerves.

Early papers thought that the thyroid might have been the major culprit, but when thyroid extract was given to one woman, she promptly died. At that point, she was in very bad shape and I'm sure, not much would have helped her. Many of the current doctors read that research - done in the 1950s - and say, "we don't know much about this disease". Sadly, most doctors don't anything about learning about the disease either. Most don't get on the Internet and read what is available.

Not much has been done in the United States about this disease - besides excision (surgically removing the tumors or deposits), pain medication, and in the last few years, LIPOSUCTION. The jury is out on all these treatments. I hear the worst about Liposuction. People said it stirs up the cells and makes them grow faster. Some doctors also advise against it. I have spoken to a man who has had 250, yes 250 of these tumors removed. Never would he have LIPOSUCTION done on them. In at least one of the surgeries, the surgeon had to move his nerve and relocate it because it was so pushed aside by the lipomas.

More to come:

Doctors I have known
This is an evaluation of the doctors I have visited, and how they have helped me or not.

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Last modified on 18 Nov 2003

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