Do Your Homework
Staying abreast of new treatments and therapies should be an important part of your management plan. But you'll also want to get a handle on your current medical care. Do your homework! A recent survey revealed that up to 50 percent of Americans at all socioeconomic levels struggle with health literacy, defined as the ability to read, understand, and act on spoken and written health information from medical professionals. And according to the Health Literacy Coalition, 80 percent of patients forget what doctors tell them as soon as they leave the office. This means there are a whole lot of people who are uneducated and confused about their medical conditions!
The complexities of multiple sclerosis make it a rather complicated subject to grasp, and other factors, such as complex medical terms and difficulties in communicating with your doctor, don't make it any easier. People often feel embarrassed to admit that they don't know something and fail to ask for help. Being an informed patient and staying on top of new treatments and developments will give you the edge you need to manage your illness.
It's important that you shoulder some of the responsibility when speaking to your doctor by taking notes and asking questions, but you also have the right to be spoken to in a language you can understand. This means that your doctor should be willing to skip the medical jargon and speak to you in layman's terms. While the medical community is increasingly requiring patients to take responsibility for their own care, sometimes what is asked of them is beyond their capacity to comprehend. Ask your doctor to use visual aids, such as a picture of the central nervous system, when describing functions or conditions. In general, people seem to remember key points better when a visual aid is used to emphasize a point.
Some medical offices are beginning to post treatment plans online so patients can log on when needed; if this isn't available, have your doctor write out any information as a backup. It is also important to talk to your doctor about new treatments or information that interests you. Schedule an appointment apart from regular visits to discuss your ideas.
The first thing to do before you begin research on multiple sclerosis is to get organized. Purchase a notebook where you take and keep notes. Here are some other helpful tips for researching your condition:
Cast a wide net. Your doctor isn't the only one who has information on multiple sclerosis, although you should always use him as your primary source. Don't forget that pharmacists, CAM practitioners, medical librarians, and other nonprofessionals may have the information that you're looking for.
Surf the Internet. The Internet is a great place to find education and support, but it's a two-sided coin. A good amount of information that you'll find online is outdated or erroneous. The key is knowing where to look. Once you get the hang of it, you can navigate your way to the websites with the best information. Typically, government and university sites are the best resources, along with organizations and societies dedicated to MS. The pharmaceutical companies that manufacture the MS medications are also a good resource, but keep in mind that those sites also contain marketing messages.
Find out about clinical studies. Clinical studies are a great way to become familiar with new treatments in the pipeline, but they can be somewhat hard to read and interpret. In their basic form, they're divided into several sections, with the abstract (summary of key points), the results (where the data is summarized), and the discussion or conclusion sections the most important from a lay perspective. Significant studies usually make their way into articles, journals, and websites where they've been rewritten for the general public.
Visit your library. If you don't have a medical library nearby (such as a university or hospital library), your public library may have a wealth of information on hand. Ask your librarian to help you find current journal or newspaper articles on MS and browse the catalogue of books pertaining to the subject.
Well-meaning friends and relatives often have a plethora of tips and ideas for the person with MS. If something sounds interesting, do your own research and check with your doctor. A good way to handle unsolicited advice is to thank them for the information and tell them you'll look into it at a later time.