I have read several emails from people who are members of the Discovery Health Channel board on Mystery Diagnosis. Three women and one man have told me that they've discovered the cure for their illnesses are found directly on this website, and are excited about it. Two other women said they are still waiting, and I'm quoting both emails, "for SOMEONE to help". Each has posted a long letter regarding symptoms, letting the readers and board members know the frustration each has faced. One was very upset that the television show hasn't contacted her to help her find a solution. The simple response is- television can't cure us.
Tonight there's a show called "I Want to Save your Life". Dr. G. Medical Examiner has a show about ways not to die. My friend Stacy Kaiser has a show called Diet Tribe. Another friend, Ant, does Celebrity Fit Club. Dr. Oz has the "You, On.." series. There are dozens of shows about diseases and disorders on every day, on many networks, and in any language. But, although we can learn about our conditions, or perhaps find resources that will lead us to support, tests, or even medications, the bottom line is- we need to be the active participants in our own care, and we can't solve our problems with remote controls.
For those of us who have chronic conditions, it may be a great time to get in exercise- simply watching television and getting some- any - movement happening in our lives. Ten sit-ups, ten push-ups, arm curls with a can of peas- leg stretches- all can be done in less than ten minutes a day. If we can manage enough energy to sit and watch television, we can move, and that's always a great way to help improve our health. If we are in wheelchairs, or even partially mobile we can try to tighten and relax our muscles to complete some isometric exercise. It doesn't take much effort to keep our muscles alive.
But what if you find some clue to your illness from something you find on television? What if Dr. House mutters some random symptoms that you've been fighting with for years? What if you hear a woman and her children on a Discovery Health network program discuss the exact episodes you've faced for months? Can you find a solution for your illness from a television program? The answer is up to you, and in your ability to see past a television program for answers.
We've talked about finding a doctor who will listen to you as well as have you take your tests. We haven't talked about ways to approach your doctors with information that may assist in your diagnosis. Part of the problem is that television gives part of the answers, but not always the full solution. Some misdiagnoses go on for years because of misinformed doctors and patients. Right now the "hot diagnosis" is Vitamin D deficiency and partly due to Oprah, Hypothyroidism. The hot cure-all is Acai for weight and Sam-E for depression. Some doctors are dazzled by the advertising and representatives from Pharmaceutical Companies and gladly will hand you the latest and newest pills and potions. Others prefer to concentrate on your own individual responses to medications, tests, and even mental reactions to questions. They treat you like a person and not a product tester.
These are the doctors we want to have. We want to be able to say to our doctor, "you know there was a program on television that listed symptom x, y, z, just as I have. The show discussed the idea that the patient had Disease A." Then, if your doctor listens you will have a discussion about that particular disorder, why he thinks you could or couldn't have it, and what should be the next step in ruling it out. The smartest approach is to do your homework and write out your questions that lead to specific answers. Let's use the example of "Lupus", as it seems to be ruled out dozens of times on the show, House MD.
First, search for sites with Lupus support groups. Learn from the members the different tests that were take to discover the illness. Lupus isn't always easy to test for, and some people have symptoms for years before ever having the butterfly shaped skin color change, or the multiple joint failures. Find out what tests seem to provide the clearest answers to doctors and to patients alike. Then write down the names of these tests, how many times the tests should be performed, and of course, if you can, how the test is performed so you can have a discussion about it.
Secondly, make a note of all the of the symptoms you have the correlate to this illness, but also note the symptoms that may not be related. All symptoms you have may relate to other disorders, and could be mistaken for Lupus. Some people who have MS, for instance, are misdiagnosed with Lupus or having Fibromyalgia just for not being clear on all symptoms. The more symptoms YOU are clear about, the better your doctor will be able to assist you and diagnose you right the first time. Even if you think it's not important, it may be just the right symptom that is the key for your doctor. Include body temperature changes, weight fluctuations, and if you have changes in hunger. All of this could be important. It is better to have more details than none.
Make a list of questions that start with the words "What if..", such as "what if the tests show nothing the first time, will there be a second test?", or "what if the test is positive, will you treat immediately, or will you offer a second test to confirm?" The doctor should be able to help you as best he can, given the information he has at the time. But, be prepared to leave a list of questions with your doctor to give him time to research your condition, and give you proper responses. You may not get all the answers you want, especially in the land of 15 minute or less appointments.
Just because the person on the television has your symptoms doesn't mean you have the same disease. Be prepared for the idea that your doctor may counter your suggestion with reasons as to why this tv diagnosis isn't right for you. Some disorders have similar symptoms, and more to the point, your illness may not be as simple as something cured on television in 60 minutes or less. I knew for years that I had Ehlers-Danlos but I never knew it would put me in a wheelchair. My doctors weren't discussing this with me because I never said to them, "Yes, I have this, and I want to know what happens with me in the future." It was just acknowledged, and all of my illnesses that related to it were disregarded or thought of as something different. This is the issue with not clearly understanding a condition. With years of misdiagnoses came the resulting Hashimoto's complications.
Today's Questions- Would you bring a check list of symptoms to discuss with your doctor at your next appointment? What have you found on television that was close if not exactly your condition- so much so you've sought medical assistance? Have you found support through the forums from television programs on health?