Here are some tips that may help those newly diagnosed with MS to manage the disease:
1. You heard it but what is this disease with the strange name? The first step is to find out everything you can about MS.Myths and misconceptions about MS are everywhere and you need to know the facts so the diagnosis is not so frightening. All newly diagnosed need to understand that MS is a chronic autoimmune disease affecting the central nervous system. It involves the immune system mistakenly attacking the myelin sheath that protects nerve fibers in the brain and spine. Myelin is destroyed and replaced by scars of hardened tissue (lesions), and some underlying nerves are damaged. But MS is almost never fatal, and most people diagnosed with the disease never need a wheelchair.
2. Make sure that your MS diagnosis is definitive. That might seem unnecessary butMS is not an easy disease to diagnosis, so getting a definite diagnosis can be a waiting game. Various tests may be used to make a diagnosis, including magnetic resonance imaging (MRI) that is not so scary as you think and lumbar puncture or spinal tap, hopefully never again.
According to the latest US criteria, to make a diagnosis of MS a doctor is required to:
- Find evidence of damage in two separate areas of the central nervous system;
- Find evidence that the damage occurred at least one month apart; and
- Rule out all other possible diseases and diagnoses.
For some people, getting a definitive MS diagnosis is actually a relief. It was for me in 2002, at last I knew what was wrong.
3. Understand that MS symptoms are as varied as they are unpredictable.No two people have exactly the same MS symptoms, and you may have different symptoms from time.
4. Never delay MS treatment.The goal of MS treatment is to control symptoms and improve the patient’s quality of life. After receiving an MS diagnosis, it’s important to start treatment as soon as possible. A number of approved medications have been shown to modify or slow down the progression of MS and lessen the frequency and severity of MS relapses.
5. Keep track of your MS symptoms.By noting all your symptoms as well as how you are feeling, you will be helping your doctor determine how the disease is progressing and whether the medications you are taking are working.
6. Try to avoid MS episode triggers.Extreme fatigue is a common indicator of an impending relapse, which can last for days, weeks, or months. But stress, smoking, fever, hot baths, and becoming over heated are believed to contribute to the worsening of MS symptoms and relapses.
7. Find the right doctor.MS is a lifelong disease, so it’s important to be under the care of an MS specialist who is a good match for you. The neurologist who provided your initial MS diagnosis may not be the one you want to stay with as time goes by.
8. Consider other treatments.In addition to taking standard medications, you may want to consider things such as biofeedback, acupuncture, guided imagery, meditation, massage, tai chi, yoga, and dietary supplements. You may want to consider HSCT, including chemotherapy, to reboot your immune system.
9. Think about who you will tell that you have MS.Before disclosing the disease to your boss and colleagues at work, know your rights. In the US, you’ll find these covered by the Americans with Disabilities Act while in the UK they are under the Disabilities Discrimination act. Outside work, you will naturally tell your closest family members and friends, but you don’t have to tell everyone.
10. Never give up hope.New treatments and advances in research are being revealed all the time and the time may not be far away that a cure will be found.