It used to be that we went to the doctor for diagnosis and to set treatment. We relied on them as the expert and, rarely, we would go to another doctor for a second opinion. But we are now in the information age. There is information from everywhere: on the internet, in drug company commercials, through ads in your favorite magazines, even advice offered unsolicited from strangers.
In a future post, I will discuss how to find trustworthy online information.
Your Primary Care Physician
If you have never been sick before, you may not even have a primary care physician. If this is the case, you can begin your search here.
“I’d never been very sick before MS,
so doctor shopping was uncomfortable for me.
–recently diagnosed MSer
The easiest way to find a neurologist is to get a referral from your primary care physician (PCP). Ideally you should be working with an MS Specialist but your PCP might want you to see someone right away. Just know that a regular neurologist is a physician that specializes in neurological disorders including not just MS, but other conditions like stroke, Parkinson’s, and ALS.
Whether you are newly diagnosed with MS or have had it for years, having regular contact with an MS specialist should be a priority.
Where to Look
- Consortium of Multiple Sclerosis Centers (CMSC)
Generally, specialized neurologists at MS centers work primarily in the treatment of MS, have seen many more patients with MS and a much broader variety of symptoms than a general neurologist. To find the nearest MS center to you, visit the CMSC directory.
- Partners in Care
NMSS’s Partners in MS Care program involves healthcare professionals in neurology, mental health and rehabilitation. To find a Partner in MS Care, use the search tool here to find doctors near you. New partners are regularly added. If you do not find what you are searching for, want personal assistance, or seek additional names of healthcare providers, please contact an MS Navigator
- An MS Navigator
The National MS Society’s MS Navigator can help you find a healthcare provider. They can also help you identify benefits you might be entitled to and health insurance coverage.
This database offered by the U.S. National Library of Medicine has more than 27 million citations to biomedical research from Medline. You can see which doctors and facilities are publishing MS research and can be considered experts.
- Patients Like Me
Online communities like this one have chat rooms, blogs, and survey information. You might ask for recommendations there.
Ask friends and relatives (and maybe people in your support group) for information and suggestions, but ultimately find a doctor you like and works for you. Physicians should be willing to explain their treatment choice, listen to your concerns, and make adjustments where possible. If you are not feeling listened to, keep looking.
When you find one, keep on working with him or her. Build a rapport, tell him or her if you are getting acupuncture, or have a personal trainer or stress coach, for example. Studies have even demonstrated that shared decision making these days leads to better medication regimen adherence!
and they can’t know what we are thinking
unless we are willing to speak up and
get engaged on our own behalf. ”
—MSer speaking at a recent MS talk
Now more then ever there needs to be dialog between doctor and patient. And while healthcare providers should still be guiding things, we should recognize that it takes a team to manage anyone’s healthcare, not just for those of us with MS.