Internet Education During Diagnosis Process

I have previously written about the value of the Internet when trying to find a patient friendly physician. Additionally, the Internet has become my main research tool since I first began my search to find the cause or causes of my various symptoms. The Internet holds a vast amount of information, in one convenient location, which is so important when a patient is dealing with an undiagnosed condition. I have spent more hours than I can count, researching my symptoms one by one, cross-referencing conditions, and essentially ruling out conditions that were not applicable. This is not an example of a patient playing doctor. I was a patient, who took charge of her health by doing research, and who educated herself enough to be able to ask the right questions to specialists that needed answers.

Although we have been taught to depend upon physicians in the medical community to provide all of the answers for our healthcare needs, I have learned that taking this approach is not beneficial. I acknowledge that physicians have more knowledge about medical related issues than I will ever be able to glean from the Internet. However, each physician’s knowledge base differs, largely due to his or her specialty. For example:

1. A Primary Care Physician is a physician who provides both the first contact for a person with an undiagnosed health concern as well as continuing care of varied medical conditions, not limited by cause, organ system, or diagnosis. This physician can determine the cause of many acute conditions, such as an ear infection or a virus. Although a Primary Care Physician is not restricted from diagnosing a chronic illness, and will often render a differential diagnosis, many will refer a patient to a specialist that is specifically trained in a category of illnesses, to insure that the differential diagnosis is accurate. I personally believe that this action contributes significantly to the patient’s peace of mind, allowing the patient the peace of mind, knowing that the differential diagnosis is the correct one.

2. A Neurologist is a specialist who has trained in the diagnosis and treatment of nervous system disorders, including diseases of the brain, spinal cord, nerves, and muscles. A patient might be referred to a Neurologist if the primary care physician suspects a stroke, cerebral palsy, or a brain tumor.

3. A Movement Disorder Specialist is a Neurologist who sub-specializes in a group of similar neurological conditions that affect the way the body functions. Parkinson’s Disease, Dystonia, and Tourette syndrome are examples of conditions that would prompt a referral to a Movement Disorder Specialist.

4. A Rheumatologist is a physician who is qualified by additional training and experience in the diagnosis and treatment of arthritis and other diseases of the joints, muscles and bones. Under the Rheumatology umbrella, there are more than 200 types of these diseases, including rheumatoid arthritis, osteoarthritis, gout, lupus, back pain, osteoporosis, and fibromyalgia. Many of these conditions can be difficult to diagnose.

It is not by chance that I mention the above referenced physicians. From my experience, these physicians are the ones that a patient may see when the motor functioning of the body is in question. Specifically, I am referring to chronic conditions that may affect movement, coordination, balance, muscles, joints, etc. This would exclude other types of chronic illnesses such as heart related conditions, internal organ function, cancer, etc. I have learned that symptoms of chronic conditions affecting the motor function of the body can often be symptoms of either a rheumatic disease or a neurological disease. Because of this, a patient may be sent to see a Rheumatologist to investigate a rheumatic cause for the symptoms, and may then be sent to see a Neurologist to investigate a neurological cause for the symptoms.

One of the first specialists I initially saw was a Rheumatologist. I was sent to the Rheumatologist for an evaluation, specifically to rule out or confirm fibromyalgia. In addition to the fibromyalgia evaluation, my Rheumatologist ran specific blood tests to rule out other rheumatic diseases that she thought could be causing my symptoms. After her evaluation was complete, it was her opinion that my symptoms were neurological in nature.

From this point forward, I began seeing Neurologists, which includes Movement Disorder Specialists, through my insurance and as a private pay patient.

Rheumatologist – When I was referred for an evaluation, specifically for fibromyalgia, I spent multiple hours on the Internet to learn as much as possible about the condition. Additionally, I familiarized myself with some of the more well known rheumatic conditions, but only those conditions that had the potential to be the cause of my symptoms. I also made sure that I understood the types of blood tests and other diagnostic testing that are often ordered when rheumatic conditions are being considered. By educating myself, about not only fibromyalgia, but also the various other rheumatic conditions, I was able communicate effectively with the Rheumatologist during the visit. It enabled me to understand, the medical terminologies she used, why she ordered certain blood tests, and fully comprehend her opinion that my symptoms were neurological in nature. Finally, the greatest benefit I received by doing this research was confidence. I now had the knowledge to know the right questions to ask, the knowledge to understand the answers given, and the knowledge to know when an answer was contrary to what I had learned through my research.

Neurologist / Movement Disorder Specialist – I have been evaluated for neurological conditions by several Neurologists and Movement Disorder Specialists. I performed the same types of research for neurology as I had for rheumatology. When Multiple Sclerosis was a potential diagnosis, I learned everything I could about it, other potential neurological conditions, as well as appropriate testing through the Internet. A few years later when Parkinson’s Disease and Dopa-Responsive Dystonia became the focus, I learned everything I could about those conditions, as well as learning the difference between a Movement Disorder Specialist and a Neurologist. Based on my last visit with the Movement Disorder Specialist, I am now learning all I can about the various Parkinson-Plus conditions, again using the Internet.

Some people may say that I went to the extreme with respect to my Internet research. I have spent many years searching for a diagnosis. The many roadblocks in that search inspired me to educate myself enough, to be able to remove those roadblocks. Without knowledge, a patient places himself in the position of blind acceptance, and is fully dependent on someone else with respect to his or her health. I prefer to be a team participant with my physicians, rather than sit on the sidelines, anticipating whether someone else will reach that goal line.

Information that is invaluable to a patient during the diagnosis process and prior to any visit with a specialist is as follows:

1. Research the condition, which may have been a differential diagnosis from your Primary Care Provider. Understand the symptoms, causes, diagnostic testing, and treatment for the condition.

2. Research your symptoms to see if there are additional conditions that could be causing your symptoms. Make note of these conditions, so that you can discuss them with the specialist during the visit.

3. Research types of diagnostic tests that are routinely done for the category of conditions that the specialist treats, including blood tests, MRI’s, CAT Scans, etc.

4. Research some of the medical terminologies that a specialist may use for the conditions that he / she treats. Often, no additional research is needed with respect to medical terminologies, because they are often inclusive within research done on conditions, symptoms, testing, etc. I have found that Wikipedia, which is a free online encyclopedia, is a great resource for medical research, especially with respect to medical terminologies that are difficult to understand. I will post a link to this site in “Resources for PD, PD-Plus and other Movement Disorders”.

5. Educate yourself about the type of specialist you will be seeing. If you are going to see a Rheumatologist, make certain you have a general understanding of what a Rheumatologist is and the types of conditions he or she treats. Wikipedia is an excellent source for this research.

In summary, the Internet is the most effective and readily available tool I have used, when doing research on any topic involving my health. It is my primary source for information on physicians, medical conditions, symptoms, treatments, support groups, and any other health topic I may want to research. I have yet to find a topic of interest that was not available on the Internet. The Internet can provide a patient with knowledge. That knowledge provides the patient with the power to insure that the professionals within the medical community address his or her health in an appropriate manner that equals the patient’s expectations.