If you have recently been diagnosed with multiple sclerosis (MS), you probably have many questions and concerns as to what to do next. Here are 10 tips to help you navigate through some of the confusion.
- Learn as much as possible.
MS is a chronic autoimmune disease that affects the central nervous system. The immune system attacks the nerve fiber covering, known as myelin. There are many myths & misconceptions about MS, and each individual may present differently, so it is very important to have a consistent neurologist. Other reliable sources of information include The National Multiple Sclerosis Society and the American Academy of Neurology.
- Be sure your MS diagnosis is definitive.
MS is not always easy to diagnose. Often, other diagnoses need to be ruled out first. A diagnosis of MS is usually definitive with evidence of damage in two separate areas of the central nervous system, and evidence of damage occurring at least one month apart. Diagnosis is aided with a neurological exam and tools such as MRI, SSEPs, and a spinal tap.
- Understand that MS symptoms are unpredictable.
No two individuals have exactly the same symptoms, and you may have different symptoms from time to time. Symptoms are also unpredictable. Some will come and go, and others may be longer lasting.
- Don’t delay MS treatment.
Begin treatment early and consistently! There are a number of FDA-approved medications that have been shown to modify or slow the progression of MS and lessen the frequency of attacks.
- Track your MS symptoms.
Keeping a record of your symptoms, such as with a log book, will help your doctor determine if your treatment is working and/or recognize a relapse.
- Avoid MS episode triggers.
Certain triggers are thought to bring on relapses. These include stress, fever, excess heat, smoking, hot baths, and excess alcohol. Remember that extreme fatigue is a common indicator of an impending relapse.
- Find the right doctor for you.
Your local chapter of the MS Society should have a listing of nearby neurologists who specialize in MS. Remember to always keep regularly scheduled appointments, even if you are feeling well.
- Consider complementary and alternative medicine.
Ask your neurologist about complementary therapies such as biofeedback, yoga, acupuncture, massage, guided imagery, meditation, tai chi, and dietary supplements. According to a review of studies published in the Journal of Occupational Therapy International, more than 30% of those with MS have used complementary therapies to help with symptoms, such as fatigue, pain, and stress.
- Think first about who you will tell about your MS.
Choose those who are most supportive, and be cautious with your employer. Learn about your rights under the Americans with Disabilities Act.
- Don’t give up hope!
There are new treatments and advancements in research every day. Because MS strikes so many people in the prime of life, scientists are racing to find a cure, and a number of new MS treatments are currently under investigation.
If you or someone you know is living with MS, we welcome you to come and join us for Magee’s new MS Healthy Living Program. If you wish to register for the program, or if you have any questions, please contact Mary Clare Schafer RN, MS, ONC, CRRN (program director) at 215-218-3905.
Generous grant funding support for the MS Healthy Living Program has been provided by the National Multiple Sclerosis Society, Greater Delaware Valley Chapter.