If you feel that you may be suffering from Dercum's Disease, it is vital that you make an appointment with your Doctor to discuss your concerns and begin the diagnostic process. As discussed previously throughout this website, Dercum's Disease is diagnosed clinically, meaning that there are no definitive tests to determine if you do indeed suffer from Dercum's. To be diagnosed with this disease, you must be tested for a variety of diseases and conditions that present symptoms very similar to some aspects of Dercum's Disease. This process can become complicated and it may at times feel frustrating, but there are several things you can begin doing today to ensure that your experience will be as efficient and painless as possible.
The Dercum Society has compiled this advice for the benefit of both you, your doctor, and the many specialists you will inevitably see. As always, none of this advice should take precedence over that of your doctor, but it will however provide you with a general idea of what to expect, and what you can do to expedite the diagnostic process.
First and foremost, do not be surprised if the doctors you work with are unfamiliar with Dercum's Disease. Despite having been discovered over 100 years ago, Dercum's Disease is still widely unknown throughout the medical community. It is highly likely that your doctor, and perhaps even the many specialists you will work with, may not have heard of this disease or be familiar with its symptoms and treatment. Please do not let this lack of familiarity color your perceptions of your doctor - their lack of understanding of Dercum's Disease should not reflect badly on their education or their dedication to helping you achieve a better, pain-free quality of life. Just as with any good doctor, they will most likely be ready and willing to listen to your concerns, and if necessary, work with you to discover more about Dercum's Disease and how it may relate to your circumstances. Expect to work and study with your doctors, and expect to explain this disease a few times to medical and insurance professionals along the way. Hopefully news will continue to spread of this disease and more professionals will become aware of its existence, but until that day we can help by being ready and willing to learn alongside our doctors.
Inevitably, this lack of general understanding may become frustrating for you. However, it is absolutely imperative that you remain patient, calm, and cooperative. Please remember that your doctors are dedicated to working with you to achieve better health, but be aware of the realities of this situation. You will be working with doctors on a little known, sparsely researched disease; you will be breaking new scientific ground. This will take patience as you work with your doctor and team of specialists to discover the root cause of your condition; this will require you to remain calm so that you will be able to accurately answer any questions your doctor may have for you; and most importantly, this will require you to be cooperative as you endure visits with multiple specialists who will order multiple medical tests on your behalf. No one likes to be ill, and no one enjoys having to deal with prolonged diagnostic evaluations. But remember that this process is important for you and your well-being. Your doctors are there for you, please be there for them throughout this process by being patient, calm, and cooperative.
Later in the Specialists section of this website, we will discuss the likely possibility that your doctor will refer you to a wide range of other specialists. This is a key component of a clinical diagnosis - remember that it would be foolish and unethical of your doctor not to rely on the expert opinions of doctors who specialize in localized, specific areas of the body. Each specialist you visit will provide insight into the unique workings of your body, helping to either disprove or confirm a variety of other conditions that could be causing the pain and discomfort you are experiencing. It is important that you prepare to work with a variety of doctors, and that you cooperate with them in any way that you can. They will help you immensely, and anything you can do to assist them throughout this process will only expedite your diagnosis and eventual treatment.
There is a great deal you can do today to prepare for your very first visit with your doctor that will greatly expedite and improve the quality of your care throughout the diagnostic process. There are many questions that your doctor will ask you initially before moving on to coordinating your team of specialists. You can prepare now to answer all of those questions, thus moving you farther along the road to a diagnosis.
The Dercum Society has put together a six-page handbook to help you collect and organize all of the data your doctor will need to answer his or her questions as efficiently and accurately as possible. The booklet is available as a downloadable, easy-to-print PDF, which you can download here completely free of charge.
First, your doctor will need to know how quickly your body has been growing and in what areas that growth is manifesting. The booklet includes instructions on where and how to measure your body, as well as a chart that you can use to organize the measurements you will collect each week. This is a vital component of a Dercum's Disease diagnosis, because the disease causes the body to collect fat in very specific areas of the body. By measuring yourself every week throughout the diagnostic process, you will provide data that will prove invaluable to your doctor and team of specialists as they attempt to analyze and diagnosis your condition.
Second, your diet will inevitably come into question. It is important that you keep a daily food diary, carefully chronicling both the food you eat and the quantity thereof, so that your doctors will be able to analyze how your body is reacting to your food intake. If your body is indeed suffering from Dercum's Disease, this will provide a stark contrast between how your body is reacting to your diet, compared to how a normal body would react under the same circumstances.
Finally, the pain you experience will speak volumes to your doctor. The booklet contains a weekly chart that will help you to explain the pain you are experiencing and analyze it over a period of time. This will help your doctor to see any patterns that may present themselves that may not have been otherwise noticeable. These patterns will lend significant support throughout the diagnostic process, helping to eliminate other possible conditions and diseases. Also, it will help dramatically in finding a treatment plan best suited to your individual needs.
It is absolutely imperative that you answer each question in the handbook with complete honesty - if you provide inaccurate data, it could adversely affect your doctor's ability to diagnose and treat your condition. If you are diligent in compiling information in this handbook, you will greatly improve the quality of your care and enable your doctors to more efficiently ease your suffering.
You can download the handbook by clicking here. You will need Adobe Acrobat Reader to view the handbook, which can be downloaded here for free.
If you prepare today, you will guarantee that your road to health will be faster, more efficient, and as pain free as possible.
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