Being diagnosed with MS can be a bit overwhelming. My initial reaction led me to emotions that were all over the map. The good news is that this is not a death sentence. Oh, it was cause changes in your life, but it’s certainly not the end of the world.
I was very fortunate in that my Aunt Velma paved the way for me. She’s been fighting this disease for about 25 years longer than me, and it helped me realize that I was going to survive. The sooner you realize that this is not the end of the world, the much happier you’ll be. As soon as you decide that you’re going to fight this, you’ll make good progress.
The first thing you need to do is educate yourself. Learn as much as possible about the disease and your individual case. Knowing about what’s happening to your body is the only way to survive this disease with your sanity intact. I’ve found that there aren’t many good books about MS that are current. The internet is your best source of information and support. Both MS Lifelines and MS Active Source are good places to start, but keep in mind that they’re sponsored by two of the major drug companies.
Ask your neurologist about your case. How far advanced is your progression? If your doctor uses a term you don’t understand, stop and ask for a definition.
Since I’m bringing up the doctor, this is another big point for me. Find a neurologist who really knows MS. Ask your neurologist if they specialize in MS. If not, ask if they can suggest one who does. Many major teaching hospitals have MS centers. My neurologist is in the Multiple Sclerosis Center at Beth Israel Deaconess Medical Center, which is the teaching hospital for the Harvard School of Medicine. Unfortunately, some of these facilities require a few months to get an appointment.
Your neurologist is your partner through this. That’s why it’s so important to find one that knows what you’re going through. Get to know the front office staff. You will speak to them often for appointments, messages, and prescriptions.
