A good doctor-patient relationship matters to people with MS
Finding the right neurologist for your care is challenging, but they're out there
“What can Dr. Crayton help you with today?” I was starting my annual multiple sclerosis (MS) checkup with my neurologist, and before I met with her, I got this question from her MS nurse.
I was stumped. I’d never been asked that before. I think most people with MS would have a list of things they could rattle off — help me with my bladder problems, suggest a treatment that will ease my spasticity, or write me a prescription. But I could think of nothing. I’d been there and done that many times before.
“You know,” I told the nurse, “I’ve been living with MS for nearly 43 years. I’m almost 75 years old. My MS has been progressing very slowly for ages, and my medications are doing a reasonably good job. I really don’t need anything.”
But I was so glad she asked. In this age of 20-minute doctor visits, I don’t think most people with MS are asked what the doctor can do to help them. There’s often a lack of communication.
We’re a doctor-patient partnership
I’ve been extremely lucky. I’ve known Dr. Heidi Crayton since 1994 or ’95. She was a resident in the neurology department at Georgetown University Hospital in Washington, D.C. (now known as MedStar Georgetown University Hospital), where my attending neurologist was the department’s chairperson. I’d been diagnosed about 15 years earlier and had just entered a Phase 3 clinical trial for Avonex (interferon beta-1a). She and I were both doing something new.
Around 2007, after she left Georgetown and took some time to start a family, Dr. C. started a private practice and opened the Multiple Sclerosis Center of Greater Washington. Shortly after that, I became her patient again. Well, not just a patient. I think of her as a friend, and I think she feels the same. I don’t feel special, though. I think she feels the same way about all of her patients.
It’s a doctor-patient partnership, a collaborative effort that makes treatment decisions with quality of life foremost in mind. There’s no rush. It’s not unusual for her to spend a full hour examining me and discussing treatment. I can always reach her when I need her, and her staff is great, including knowing how to deal with insurance companies. This is the way all people with MS should be treated, but it isn’t.
How do you find a good MS neurologist?
MS is unique to each patient, and many general neurologists may not understand that concept. They may also be unfamiliar with the latest MS treatments. Additionally, MS is difficult to diagnose. It has symptoms similar to other illnesses and is frequently misdiagnosed. A good neurologist may not be easy to find for someone with MS.
One of the keys to finding one is to look for an MS specialist. The National Multiple Sclerosis Society provides a good database of recommended MS neurologists in the U.S., as well as other healthcare resources. Searching for a multiple sclerosis center, which provides a team approach to MS care, is also a good idea. You can search a worldwide list of them on the Consortium of Multiple Sclerosis Centers‘ website.
There is very good MS care out there. If you don’t have it, I hope you can find it.
You’re invited to visit my personal blog at www.themswire.com.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Dave Wright
My girlfriend's Neurologist is 70 something, and is being pressured to retire by the hospital that
is giving him an office. She has had him for 25 years, and has taken good care of her. She has RRMS, that is under control. She hasn't had a relapse for close to 3 years. The last 2 appointments I have attended, armed to the teeth with more information than he knows. Her WBC is too low for her to receive her Rituxin infusion. She's in great shape. We swim 3 days a week for close to an hour.
I'm sure once he retires, we will have hopefully searched out a new Neuro for her.
Ed Tobias
Hi Dave -
Good luck with find the new neuro. It sounds as if you're already into doing MS research, and that should help. Here's something I wrote a couple of years ago about changing neurologists that might give you some things to consider: https://multiplesclerosisnewstoday.com/2019/03/22/leaving-ms-neurologist-tips/
Keep up that swimming. It's great for both mind and body.
Ed
Maggie O'Brien
Hopefully your friend is near a facility that has a devoted MS facility, preferably with certified MS neurologists. These MDs have a few years of MS specific training. I know my original neurologist finally announced his retirement (I wished he'd stay forever, but I had to admit he deserved to leave). But he recommended someone else on the staff who worked with me wonderfully until I then met a new, young neurologist who was starting as an MS fellow. I transferred my care to him because he was lucky enough to be asked to stay on the staff . We have a good trusting relationship. At minimum I would hope the retiring neuro would recommend someone to your friend. But best of luck to her. A certified MS neurologist is the best.
Ed Tobias
Hi Maggie,
I'm not sure what "friend" of mine you're referring to as I didn't mention a friend was looking for a better neuro. But, I think many people need an MS specialist and don't know how to find one. I was writing this column for them. I wish you the best with your new doc.
Ed
Callie Curtis
Dr. Crayton and her whole office are the gold standard of MS Care. They are accessible, knowledgeable, kind, professional, and I felt that they were dedicated to helping me live my best life in spite of the MS diagnosis. I have moved from the DC area now, and really miss her care and kindness.
Ed Tobias
Hi Callie,
I spend 7 months of the year in Florida and one of the reasons I spend the other five in Maryland is Dr. C. The others are hurricanes, mosquitoes and grandkids up north.
Ed