Resources for Learning About MS
Your MS Compass will make every effort to steer you in the right direction to find resources that contain science based, accurate and timely information. We will also offer words of caution for resources that may offer unsupported claims that may take you off your path of safely and effectively managing your MS and symptoms.
The resources we encourage you to focus on are those that offer timely information based on science and do not endorse specific medical treatments or cures for MS.
The national and international organizations related to MS (NMSS, MSAA, MSF, etc.) are widely accepted as your first place to seek information. For people who desire higher levels of science and education there are sites such as PubMed and other sites designed for health care professionals.
Pharmaceutical sites are available for each of the approved MS medications and have patient education sections as part of their website. In addition to promoting and educating on their particular medication, many offer patient support programs and educational opportunities in the community to help you learn about MS.
There are many great sites/books/newsletters from reputable sources that offer tips on a variety of topics related to MS. Comprehensive MS Centers and Clinics offer online and community education programs that are often free to the public.
Look for those that include the science, research and evidence as part of the dialogue. Many blogs offer stories of people’s perceptions and opinions of life with MS. Some offer people’s experiences with medical treatments or complementary approaches to treat MS. Some are inspirational and some are sad, but all are from a personal perspective of someone living with this disease. Remember that everyone has their own personal experience with MS and different things work for different people. The caution offered with these stories is that many of the writings include only the perspective of how that one person interprets their own experience, and any of the advice offered should be taken with a grain of salt until investigated with your MS Specialist.
There are wonderful stories of inspiration offered from individuals who have taken charge of their MS and achieved great success like the ones we have in the Inspiration section on this website. Some have set and reached amazing goals that inspire us to consider changes in our paths. As you read these stories, you will notice that their approaches often include many of elements in The 50/50 Approach – medical management, lifestyle changes, belief patterns and an attitude of determination to succeed. More often than not, the success is based on a combination of factors and includes support of their health providers.
Use caution with resources if:
A cure is promised – if a cure for MS were available, it would most likely be publicized on the national news and especially on the NMSS website.
Blogs that offer opinions and personal stories of success in curing or halting MS. These are sometimes hard to resist and may give false hope at best, or cause problems when tried, at worst. They are considered anecdotal claims and mostly do not contain any science of proof behind them. If you have lived with MS for any period of time, you too have experienced changes in your MS and your symptoms and may have even identified things that seem to help. Always investigate and talk with your MS Specialist before trying something new.
Keep in mind “If it sounds too good to be true, it probably is.” When a story starts with “I was in a wheelchair, almost dead, completely disabled, etc” and ends with “I tried (fill in the blank) and now I am walking, running, flying, etc.” The problem here is that many of those living with MS experience changes in function over time and sometimes even daily. In many cases it is hard to determine what intervention actually made the difference with the MS symptoms. This is why much of the scientific research with MS symptoms is difficult.
Doom and gloom “Ain’t it Awful” sites. These stories can bring you down and are not helpful except sometimes to make you realize that life is not so bad for you!
Sites that focus on patient’s successful or unsuccessful experiences with a particular MS medication – these are often personal accounts and are one individual’s experience with one medication during one period of time.
Take the time to become a responsible researcher for yourself. There is a vast amount of quality information available for you to learn about MS and safely make changes to managing your MS and symptoms with your MS Specialist.