As a patient dealing with a chronic, debilitating illness, it's of the utmost importance that you take control of your own journey through the healthcare system. It's very easy to just throw up your hands and leave your fate to the doctors in whom you entrust your care, but I've slowly learned that by doing so you run the risk of getting lost within the system.
We all would like to think that we are our doctors’ star patient, constantly at the forefront of their minds. Unfortunately, this is simply not realistic. Medicine is a business, and, as practiced in the United States, is a volume business at that. As well meaning as our physicians and their staff might be, the fact is that every year they see hundreds if not thousands of patients. During the time that you are in their office, on their examination table, you can expect to command your doctor’s full attention, but as soon as you leave the office they must invariably turn that attention to the next patient. This is not an indictment of physicians, the overwhelming majority of whom strive to be the very best healers they can possibly be, but human nature is human nature, and a person has only so much attention to give.
Multiple sclerosis, like other chronic degenerative diseases, is a very complicated illness, one whose cause remains unclear, and whose treatments, and their effectiveness, vary widely from patient to patient. Therefore, it is vitally important that each patient maintain a clear understanding of their own particular case history, and educate themselves as best they can about the nature of their own disease. Nobody would expect a patient to comprehend the complex biology of nervous system disorders, but at the very least, a responsible patient should arm themselves with a complete knowledge of their treatment options, maintain complete files of their test results, and understand the idiosyncrasies of their own case.
Both on the Internet and in real life, I've run into far too many patients who are woefully ill-informed about the sickness that might cripple them, and who therefore don't give themselves the best chance at fighting the disease. A few years ago, I spent a week in a rehab hospital undergoing intense physical therapy. I was shocked at how many of my fellow MS patients at this facility were sadly unaware of the basics of their disease and the treatment options available to them. Some of these patients had made repeated visits to the hospital to undergo rehab, yet had only the scantest knowledge of what MS was doing to their bodies, and of the therapy options available to them. Some were in a form of denial, but it seemed that some had simply never thought to empower themselves with knowledge, instead expecting their doctors to provide them with any and all information they might need, and to make their treatment decisions for them. Certainly, a patient should never be their own doctor, but forming a partnership with your doctor is crucial in fighting a disease like multiple sclerosis.
The need for self advocacy also holds true when dealing with the staff of a doctor's office or clinic. At many large treatment centers, there are many layers of administrators and nurses between the doctor and the patient. Some offices are more efficient than others, and sometimes phone calls are not returned, messages do not get through, and test results are poorly communicated, leaving the patient in the uncomfortable limbo of waiting for a response that might never come. In these cases, there's a thin line between persistence and being a complete pain in the ass, and that line, when crossed, is entirely counterproductive.
There have been times when I've literally sat staring at the phone, anguishing over whether I should make yet another phone call to a physician's office, in the hopes of getting a much needed answer or anticipated test result. There is no ready number to how many phone calls is too many phone calls, or how much time spent waiting is too much time spent waiting, and each situation requires a judgment to be made on the part of the patient. Despite such occasional frustrations, I try to make it a rule to always be polite in my communications with office staff, and to let staff members know how truly thankful I am to them when they do provide help and assistance.
Although one invariably runs into the occasional bad egg, most clinic personnel are well-meaning and hard-working individuals, and any lack of responsiveness on their part is more often than not an indicator of just how busy, and sometimes overwhelmed, they are. Just as you never want to piss off a waiter, who might spit in your food, you should try to play nice with the staff of your doctor's office, because quite often you'll spend more time talking to them than to the doctors themselves. And, really, what's the point of being an asshole?
So, educate yourselves constantly, keep extensive documentation of all test results and office visits, and despite your frustrations, try to be nice. Above all, don't be afraid to take responsibility for your own well-being.