Have you struggled to find a neurologist who understands MS?
Here's how patients can benefit from multiple sclerosis specialists
A question that’s been bothering me lately is this: It seems that more than a few neurologists have a less than optimal understanding of multiple sclerosis (MS). Why is that?
In my four decades of living with MS, and during the several years I’ve written this column for MS News Today, I’ve regularly heard complaints from people with MS that the neurologist they’re seeing just doesn’t seem to have the right stuff.
A Reddit commenter a few years ago described one such scenario: “I was without my regular MS [neurologist] for a couple of weeks, went to the hospital and had two regular [neurologists] checking me out. I felt like I was giving a lecture. They were just clueless.”
Another wrote that they “had an appointment with [an] MS specialist, and I’ve never wanted to give someone the biggest hug before like I did with her. … My general neurologist put me on Copaxone [glatiramer acetate injection] and basically sent me on my way.”
On another site, a woman wrote about a perhaps all-too-common situation in which she consulted a general neurologist because she had MS-like symptoms, including a hyperactive knee reflex (which is one of my symptoms). “It’s probably nothing,” the doctor said, “just stress.”
Then there’s pain. Some neurologists seem to think MS doesn’t cause pain, but as many as two-thirds of people with the disease say they experience some sort of pain. I’m one of them.
Looking for ‘Doctor Right’
MS symptoms and progression vary from patient to patient. Obtaining a diagnosis can be difficult, and a treatment that works well for one patient may have different results and side effects for another. More than 20 disease-modifying therapies (DMTs) are available, with a range of benefits and risks. One size doesn’t fit all when it comes to treatment, which is why I understand why someone would want to hug a good MS specialist.
But it’s not just the doctor who is important. The MS specialists I know, including the one I’ve seen for over 25 years, all have a team. The knowledge, skill, and compassion of their nurses is equally crucial to good care. And the office staff knows how to navigate the tricky waters of health insurance — which is extra important when it comes to getting approval for expensive DMTs. It’s all a part of a collaborative effort to provide a patient treatment rather than accepting a doctor who insists on a take-it-or-leave-it approach.
Easier said than done
The National Multiple Sclerosis Society provides a good database of MS healthcare resources in the U.S. Some are grouped as Partners in MS Care, which is a variety of healthcare providers that specialize in treating people with MS. Others are grouped as Centers for Comprehensive MS Care.
The Consortium of Multiple Sclerosis Centers is another valuable resource. It certifies MS neurologists and nurses as specialists, which requires, among other things, a two-hour exam involving knowledge of MS fundamentals, multidisciplinary MS care, and patient empowerment.
These specialists and centers are often located in urban areas, which entails a long trip for a lot of people. For several years, I traveled six hours round trip to see my specialist. It was worth it for me, but long distances may be unmanageable for many others.
So what’s the answer? Adding more specialists probably isn’t realistic, but what about a combination of increased MS education for those who specialize in general neurology combined with more patient involvement in medical conference sessions? I’ve attended some of these conferences and have seen the agendas of others, and I can’t remember seeing much, if any, patient involvement. Hearing directly from people with MS might be just the right prescription.
You’re encouraged to share your suggestions in the comments below and 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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Christine Cabanillas Castle
Unfortunately, my GREAT neurologist retired and my new one does not believe in medication/s for pain and she's trying to get me off of Disability. It's been a horrible experience.
Ed Tobias
Hi Christine,
I'm sorry to hear that. Have you tried to find a better neuro, one who is more understanding of your needs?
Ed
Reginald E Bavis
I have experienced this too the Nerigolist that I have gone too lately have not known about new items that where out
Ed Tobias
Hi Reginald,
I hope you can find a better, more up to date, neurologist....or at least educate that doctor with your knowledge of the most recent treatments.
Ed
Anita Agopsowicz
Thank you for your information and perspective on things. I have encountered a wide range of medical professionals in my own MS journey since 2014.
The best professional includes my primary care physician who asked me to book my next appt with him as his last of the day since he wanted to talk about my MS experience without having to be concerned about time restraints. He spend a good 30 minutes that day with me just talking about what my MS experience has been like. He said he had limited work with MS patients and wanted to understand things from a patient perspective.Talk about a doctor who is willing to go the extra mile! He works well with my neurologist (also an excellent specialist resource for me).
The worst professional was a lager city neurologist I’d initially been sent to see by a local emergency room doctor. At the point I went to see that neurologist I had not been diagnosed with MS yet. I just knew I need to walk using a borrowed walker and really strange things were happening in my body. Late on a Friday afternoon he told me it was not a stroke I was having but that I had MS. He gave me a strong steroid prescription to treat the symptoms but stated he did not have any advice about how to get it filled since it was beyond the scope of most pharmacies due to the high dosage. He told me to look for a medical article on the internet about MS to help me understand what was happening and to book a time at the city MS clinic for assessment. Talk about a neurologist who did not have a clue as to dealing with a patient! I chose not to continue working with him as my neurologist and instead now do a longer commute to a neurologist who specialized in MS at a real MS clinic - a true leader in the field locally for me!
Thanks again for your contributions!
Ed Tobias
Hi Anita,
I'm very glad you bracketed your poor experience with two good ones. We all have to be our own advocates to make good things happen and, obviously, that's the case with you.
Thanks for sharing,
Ed
Joan Quilter
It seems almost impossible to find a neurologist who understands "Expanded Access" where a patient severely disabled by MS can access an experimental drug still in clinical trials. My daughter's primary care physician faxed the FDA for approval, but without a neurologist's support, we can't go ahead with our effort to acquire the drug LPX-TI64.
I am so disheartened because my 46 year old daughter has nothing to lose. She can barely move, barely see, and now can barely speak, after 26 years of MS drugs and more. We no longer have any use for a neurologist.
Ed Tobias
Hi Joan,
I'm so sorry you're having that trouble. Have you thought about going to a different neurologist to obtain that support?
Ed
Joy Glass
I have found most Doctors have do understand MS. I would love to find a group of specialist that understand and are knowledgeable about MS. Such as a neurologist, urologist, gastroenterologist and pulmonologist. I have been told by a neurologist I worked with that my increased numbness in my feet was because I was getting older. The neurologist that did diagnosis me, lectured me on how you woman nurses and teachers have all these autoimmune diseases. Very few have any knowledge of the Ms hug and how painful it can be and that it can cause lung disease. Truly I am not looking for pain meds, just comfort. I use ice or heat, take Tylenol, use CBD gel, stretch and breathing exercises. Honestly I could go on and on. Sadly, I avoid going to Doctors. I have felt dismissed and judged. The system is very broken. Try getting an appointment with a doctor.
Ed Tobias
Hi Joy,
I'm sorry you're having such a problem but, you know, you're not going to be able to solve it if you avoid doctors. And yes, I know how hard it can be to get an appointment. The comprehensive care team you're looking for can usually be found if the neurologist is part of the Centers for Comprehensive MS Care that the National MS Society lists on its website: https://www.nationalmssociety.org/Resources-Support/Find-Doctors-Resources. Perhaps you can find what you're looking for there. If you're not in the US I'd start my search on the website of the MS organization in your country.
Ed
Janet Neilson
I feel that I need to see a neurologist or someone who is qualified to look at my problem and tell me for sure that ms is not causing my proble. I've had one ms nurse tell me over the phone that it could be and another over the phone saying that it's not. I don't think they could know without seeing the entire problem.
Ed Tobias
Hi Janet,
Over the phone??? MS can't be diagnosed over the phone. I don't know what needs to be done to make it happen but I suggest you push to be seen, in person, by a neurologist and ask to receive a full examination.
Ed
Lisa R Marino-DeQuarto
I find this very interesting. Im a MS'er for approximately 30 years. At the very beginning I traveled to Long Island from Brooklyn for years to be asked if I wanted to go out on disabiity, I refused, I loved working. I have changed nuerologists, to find one that can help me understand my condition. Ive taken TONS of Tests. Tons of Physical Therapy. I've had 100's of MRI's and chose not to fail. But still did'nt find that doctor that did'nt sit there and scribble on a pad and give me some type of answer. Time goes by, i am on the same medication for years. Met someone at PT in New jersey, where we live now, who had referred me to his doctors office, in jersey shore that specializes in our condition, MS. I was amazed from the first visit. Every assistant ran me through tests. Cognitive, walking, blood test, eye test, reviewed my history, medication etc. prior to sitting with my new doctor. I sat with my new Nuerologist, who calmly explained that the medication that I have been taking for YEARS, is not working for me any longer. There has been so many NEWER and updated medicine that would be best for me at my age, Of course you cannot turn back years, now im in a progressive stage. but fighting with my ALL , to walk with a cane. I never became a mom for fear of the worst. I am a Nanny through my 22 year marriage, and love it. I never it down...until I have to. but things are getting more difficult now. In PT people would say they are there from knee surgery, etc, asking me what is my story? I look them in the eyes, with a smile, and say i have Multiple Scelrosis for LIFE..I have been here a long time, I get, you'd never know. you look fabulous!!! They do not know what we feel inside.. Just Keep Smiling..Tomorrow, is my first infusion, with a new medication. I'm EXCITED!!
Ed Tobias
Hi Lisa,
I'm really glad you found a good neuro and are starting on a new treatment, even though it took you a long time. I've been on two infusions, Tysabri and Lemtrada and both, I think, have helped. They're both certainly better than the Avonex shot that I jabbed myself with for seven years. I just don't understand why some neurologists fail to track progression and modify treatments accordingly.
Anyway, good luck with your new medication.
Ed