Your feet feel numb. Your vision is blurred. Your legs are weak. You’re always tired.
You’re much too young, busy, happy or healthy for your body to be giving you any problems.
You ignore it. It will go away. Keep moving. Keep hoping.
Only it doesn’t go away, and you begin to worry. You start getting annoyed with your body. Why is it acting this way?
If any of this sounds familiar, you are not alone. Most MS patients share similar stories about their diagnosis. Yet the route we take to get a diagnosis is as unique to us as our MS.
One or more of these scenarios may have happened to you before your diagnosis. The first question to ask is, “What type of doctor should I go to?”
That question sounds easy, yet each doctor is not “one size fits all.”
It is important to find a reputable doctor that is up-to-date on current research and medications for people with MS, whose practice is mainly patients with MS, and who is willing to work with you as a team. It’s best to find a doctor who will LISTEN to your needs and concerns, and not rush you out the door. It’s also important that they are amenable to different medications, and open to complementary medicine if that interests you (i.e. acupuncture, yoga, meditation.) Whether you want them to be aggressive about an exacerbation (i.e. using medications to immediately fight a flare-up) is something for you to consider.
The neurologist who diagnosed me was not an MS specialist. After I received my diagnosis, I changed doctors and started going to a non-profit MS Center where I received excellent care not only from my neurologist, but also from the nurse practitioners, social workers, cognitive therapists and support staff. They became my second family.
I changed doctors after 22 years because I wanted a location closer to home. That was a big mistake. My new doctor allotted exactly 30 minutes for each appointment whether I was done with my questions or not. He never looked directly at me while I spoke. He was highly recommended and well connected with a good standing in the MS community. If I could have run out of the office after he cut me off at my last appointment with him, I would have.
Today my doctor is in New York City. It’s a bit of a schlep, but well worth it. Now that I’m a midlifer, I’ve noticed my body is changing in new and strange ways. I want my new neurologist to be the best. (NOTE: A neurologist is the medical specialty concerned with the diagnosis and treatment of disorders of the nervous system, which includes the brain, the spinal cord, and the nerves.) My new neurologist is involved in the cutting edge of research, lectures extensively around the world, and is an excellent diagnostician.
Here is some useful information to help you find a doctor that’s right for you:
Multiple Sclerosis Certified Specialists: Today there is a voluntary certification process to become more knowledgeable in MS care. If a healthcare worker has the initials “MSCS” after their name, now you’ll know why:
According to the Consortium of MS Centers, “All licensed health professionals, with a recommended one year of experience caring for patients with multiple sclerosis, will be eligible to take a certification examination in multiple sclerosis. Those who successfully pass the examination will be called a Multiple Sclerosis Certified Specialist (MSCS). Rehabilitation professionals, licensed nursing professionals, social workers, psychologists, neuropsychologists, and other licensed personnel are welcome to apply for this examination”.
Recommendations and research: Ask trusted friends and relatives who have or knows someone who has MS for recommendations. Once you’ve received some names, begin to do your research. One patient offered this advice, “To choose among the neurologists available, I researched them online and read what other patients had to say at Healthgrades.com and similar sites. I chose the best from their comments.”
I also use Vitals.com and check on a physician’s background in education, the number of years they have been practicing, what hospitals they are affiliated with, the accepted insurance plans, and comments from patients.
One patient offered a comment about her choices because of her insurance plan: “My insurance had to refer and approve of mine. I was limited by my location.” Unfortunately we are sometimes at the mercy of insurance companies, and the doctors they cover in your plan. (I have called my insurance company to speak to them about a certain doctor I wanted to see. I was not successful, but perhaps other patients had more luck than I did.)
Another patient commented, “I go to a specific group of doctors who are part of my local hospital’s charity program.” If there are financial considerations, this is an excellent idea. Contact your local hospital to see whether they also offer a charity program.
Contact The National Multiple Sclerosis Society: The NMSS keeps a list of doctors that treat MS. They cannot recommend a doctor in your area, but they can provide you with a list of them. Visit their website for more information.
Make a list of questions you want to ask the doctor. Think of this as an interview. You probably won’t get the doctor on the phone, so call the office during a slow time (late morning/early afternoon) to speak with the receptionist or a nurse practitioner. It’s a good idea to make a list of questions before you call. Sometimes you can get a feel for what the doctor is about by asking the right questions beforehand.
Support Groups: MS support groups are a great way to ask for recommendations. Your local MS support groups can be located by contacting your local MS chapter. Visit The National Multiple Sclerosis Society’s website to find out more.
Remember to call your insurance company, once you’ve narrowed down your choices, to see whether they cover office visits and treatments. You need to confirm that the doctor you choose is “in network”, lowering your cost for treatment.
The journey has begun, but you are never alone. Help is out there, so take advantage of it by doing your homework. You’ll be glad you did.
There’s one last thing. If after all of your homework, and after your first visit, you find the doctor you chose isn’t right for you, don’t hesitate to change doctors. You deserve the best treatment possible. There is no shame in changing doctors if you feel your needs are not being met. Taking care of your health is the most important thing you can do for yourself.
A special thanks to my MS friends on Facebook who provided me with comments for this article. You are extraordinary people who help to support, uplift and inform each other every day as we struggle with MS together. You are all heroes.