During the course of this illness, I have visited many doctors, clinics, and other places in search of diagnosis, compassion, knowledge and even treatment. The results are interesting:
Timothy Berger, M.D.
Dr. Timothy Berger at the University of California at San Francisco is a dermatologist. He saw me January 1998 and wasn't sure what I had going on with me. I presented with terrible pain and swelling in my abdomen and reported that this got better and worse according to my menstrual cycles - which I was still having at age 51. He is very thoughtful and asked many questions - asking if I had had endocrinological tests which sought out if I had Cushing's Disease - even though he didn't think I had it - but he wanted to rule that out. He sent a thoughtful letter to several of my former doctors and gave suggestions of what it might be and what it might not be. I also told him that the fatty tumors started as I was taking a course of DHEA prescribed to me by a medical doctor in southern California. Dr. Berger was not familia with DHEA - and that is what I thought was very hopeful about him - he didn't make believe he knew things he didn't know.
A week or so later, he called me at my home and said I think I know what you have. I said "good, what?". He said I think you have a disorder known as Adiposa Dolorosa. I thought what a cute name. He told me that it was in women in their 40s - postmenopausal, that there was not a lot known about it. I said "why not?" I said "the population is getting more and more filled with that age group."
Well that set me and my ex-husband into overdrive looking up what the disease was and wasn't - and what was reported in the literature.
Dr. Berger - while not being familiar with the disease, at least did some research, asked around and did get back to me. Therein lied the miracle. Not that he knew what it was, not that he had seen it before, but just the fact that he tried. So for diagnosis he is great. He is also not a haughty or arrogant man - at least with me he hasn't been and when I tell him what I've learned, he doesn't sneer or ignore me. We've talked about the fat, the nerve involvement, the possibility of insulin problems. He is a smart man who practices medicine the way I remember our family doctor in New York 50 years ago did. His name too, was Dr. Berger.
Steven S. Greenbaum, M.D.
So much of life is serendipity. While my ex-husband was searching one day on line, he was just racing through subjects and said "you're not interested in this are you?" "What?", I said. He said "this article about Corticosteroid-Induced Juxta-articular Adiposis Dolorosa". Well I was interested, because I knew that the DHEA had something to do with steroids. So we found the abstract and I hunted down Dr. Greenbaum, dermatologist, who practices in Philadelphia, Pennsylvania. He also was a sweetie (very technical name for doctors who aren't assholes). He too knew Dr. Timothy Berger and asked me how "Tim" was. I had only met Tim once, but said he was wonderful. Turned out they had been at UC San Francisco together. Dr. Greenbaum had written a paper about a woman who had developed Adiposis Dolorosa around her knees after taking high doses of prednisone for another disorder. His paper very well documents what many of the people with Adiposis Dolorosa experience. He was so kind to talk to me on the phone and send me a copy of his paper. When I told him that this had started for me in its most active form after taking DHEA, he did not seem surprised. He, like Dr. Berger, is a decent man, who was helpful and if you would like a copy of his paper, contact me or call him. I have given this paper to many of the doctors I have seen.
William Hoffman, M.D.
Lest you think I am a UC San Francisco groupie, Dr. Hoffman also is another good doctor who is interested in the surgical portion of Adiposis Dolorosa. He is a plastic surgeon and was willing to do surgery on myself and another woman (Chris) with this disease. She had seen him earlier in the year when her tumors were in different locations and much smaller. I wanted to interview him and she came to the appointment with me. He is bright, assertive and did an excellent examination of all parts of the body I asked him to. He also had a general surgeon with him who was now specializing in plastics (the name doctors call plastic surgery). She felt places all over my body and said she had never seen anything like it or heard anything about it before. He was willing to do the surgery on me and Chris and if I have it done, I will probably go there. He also acknowledged that he didn't know about the disease and he did read the research papers I gave him, right when I gave them to him.
This section still under construction (consideration)
Don't waste your money!
The Mayo Clinic is very good at diagnosis! They very effectively schedule a battery of doctors to examine you and request diagnostic tests to occur within a fairly short time. The doctors talk to one and another, and share results and opinions.
This is in stark contrast to the normal procedure of going to Dr. A, who doesn't know and refers you to Dr. B. This process normally takes 3 weeks to 3 months to get the appointment, and then the second doctor doesn't have the information the first doctor had that caused the referral.
The MAYO clinic was good at excluding a lot of diseases this could have been.
BUT they have difficulty recognizing the existence of this disease, because they don't have a test they can perform and get proof-positive results!
If fact, I never really did get a firm diagnosis from them! In fact, the chief dermatologist said she and her colleagues were familiar with Dercum's Disease and didn't even think I had it. And if I did it was atypical. I told her, well the disease is atypical, so why can't we have atypicality within an atypical disease? The way I was examined was extremely limited to my abdomen and when I told her I also had these growths on my ankles, she said it was not her specialty. I thought to myself, this is pathetic, these tumors don't know what specialties they belong in. This is the absurdity of specialization. We are seen in pieces and parts. Few doctors look at the entire organism and while specialties are good, Adiposis Dolorosa does not lend itself to such a limited world view.
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