MS101
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Get Organized

This is the beginning of an ongoing learning process. When your doctor gave you the news, you may have been too shocked and unprepared to ask many questions—or even really understand the answers to the ones you did ask.  It’s time now to get organized.  Make some lists, figure out who you want and need to talk to, and ask questions.  The more you know, the better you can work with your medical and personal needs to fight MS.  Right now, as you are dealing with your initial diagnosis, it is a good time to build a foundation of knowledge that will help you get off to the right start.

Now is the time to be proactive about getting the information. To make good decisions for yourself, you need to understand the disease and your treatment options.  MS is a chronic disease—which means that you will have it, with or without symptoms, until they find a cure.  The decisions you make about your approach to MS and your treatment will affect how you will live your life from now on.

As you begin, keep this in mind:

  • Be aggressive and pro-active.  Now is the time to actively begin treatment and taking care of yourself.
  • Be your own advocate. Doctors have hundreds of patients. The more you know about your own medical history and treatment, the better you can ensure you are getting the care you need.
  • Protect yourself from negative information.  When you are doing research you are likely to run into all kinds of potentially upsetting information.  Avoid it. Focus on the things you need to know about treatment options and taking care of yourself.

Make a list of your questions, but understand not every question has an answer.  Unfortunately, for all we do know, we still don’t know what causes MS.  It is also important to remember that MS affects everyone differently.  So even your doctor cannot answer the big questions: What course will my disease take and how will I be affected by it?  You should be suspicious of anyone who proposes they have those answers—especially if they paint a picture that suggests that you are on an inevitable path to significant disability.  Studies have shown that more than two-thirds of new MS patients don’t sustain a serious disability after twenty years—and with the rate of progress in research and new drugs, we have a lot to feel optimistic about treating, even curing, this disease.

The bottom line is:  there is a lot of uncertainty with MS and sometimes that’s the hardest thing to get used to.  That uncertainty is really just a reality check:  life has no guarantees.  With MS you lose the illusion of certainty, and sometimes there are hidden gifts in that new view of the world, but there are also a lot of reasons to be hopeful.  The fact is these days—with the great strides in research and treatment—the majority of people with MS can live full, active lives.  The more you know and the more committed you are to your health and treatment, the better you are likely to do in the long run. 

As soon as you are prepared, go talk with your doctor and/or a nurse practitioner to get more information about your diagnosis and his/her recommendations for your treatment.  Don’t start with a comprehensive search of the Internet.  It’s best to see a neurologist—preferably one with an MS specialty—who can review your medical history, confirm your diagnosis, and answer your questions based on the latest research and their own experience with other MS patients.

Bring a pad of paper, a pen, and a friend.  When you talk to your doctor, it is very helpful to write down his/her answers so you can refer to them later.  We also recommend bringing someone with you who can help you listen and ask questions.  They can be a real resource to you later as you are gathering more information and making decisions.  You may want to give the person who goes with you your list of questions and concerns and ask them to help make sure you cover them all.  Also ask them to take notes.  If you take a spouse or someone who is likely to be directly affected by your MS and treatment, be careful to keep this conversation to your needs and concerns right now.  That being said, ask them ahead of time if there are any questions they would like to have answered. 

A word of warning:  Be careful about using the World Wide Web to get your answers. Google, Yahoo, and the other search engines don’t filter content for accuracy and validation.  There is a lot of misinformation out there. Some of it can misguide you and some of it can scare you out of your wits. In addition, there are a lot of charlatans and “wishful thinkers” who are happy to sell you on their personal theories, miracle products, and healing services. Avoid all that for now.  Get your feet under you first. Use TurnFirst.org, which is created and reviewed with input from some of the top MS specialists in the country. It is the best place to get started and get smart.  You can expand from here when you are better prepared to evaluate what you are reading.