Is It Time to Change Your MS Doctor?
The other day, as I cruised around various MS internet groups, I came across a lament that I’ve seen before. But this one, for some reason, jumped out at me.
A woman with MS wrote that she was “fortunate” that her RRMS symptoms were relatively minor: fatigue, numbness in several parts of her body, some speech problems. So she felt guilty about the complaint she was about to share.
Her complaint was that she’d been seeing her neurologist for five years and he was making her feel stupid. He made her feel like some symptoms she complained about weren’t real. When she told him that her fatigue was extreme, his response was “just get out and exercise.” For her last visit, the doctor was 30 minutes late. When she complained about that, he responded that she should be thankful that she’d found a neurologist who was only 30 minutes late.
This woman wondered if she was being too sensitive or, she asked, “Should I change doctors?” The response from the group was, of course, find someone new. But, it’s not that simple.
I’ve been very fortunate. I lived in a major metropolitan area when I was diagnosed in 1980. There were two university hospitals and several others to which top-notch neurologists were connected. I’ve always had a neuro who considered my treatment to be a patient-doctor partnership. And, I’ve had good insurance.
But many of us live hours from Class A medical facilities. Knowledgeable, up-to-date neurologists may be few and far between. Those who are available may not accept our insurance, if we have any. And, it seems to be the rare doctor who believes in the importance of partnering with a patient.
Are there things that we can do to improve our care, even if we’re stuck with a sub-par medical provider? You bet there are.
Being our own patient advocates
It shouldn’t be necessary, but it is. We, as patients, need to be our own advocates. In hospitals, for example, we need to have the spine to tell a doctor, “Please wash your hands before you examine me.” In a doctor’s office, we need to be prepared to make the most of our time and to be proactive. That means doing our homework.
The Agency for Healthcare Research and Quality (the lead U.S. federal agency charged with improving the safety and quality of America’s healthcare system) has an excellent game plan on its website to help you get the most from a visit with your doctor. It’s worth a look before your next appointment.
The American Cancer Society has a great guide on its website about how patients can share the responsibility for good communication with doctors. Though it’s focused on cancer patients, just substitute “multiple sclerosis” for “cancer” and almost all of its information is appropriate for us. It also is the only resource I’ve found that provides suggestions about how to raise the communication issue with a doctor who doesn’t communicate well. For example:
- “I’m worried that we aren’t communicating well, and here’s why …”
- “I need to be able to talk with you about _________, and I feel like I can’t. Can we discuss this?”
- “I realize that you’re very busy, but I need to discuss _________ with you. Can we schedule a time to do that?”
- “I’m having trouble understanding ___________. Can you help me?”
I’ve recently discovered the nonprofit Patient Advocate Foundation. Its Facebook page says that its “mission is to provide effective mediation and arbitration services to patients to remove obstacles to healthcare including medical debt crisis, insurance access issues and employment issues for patients with chronic, debilitating and life-threatening illnesses.” It’s a resource that I’d check if I were having those issues.
Is there a doctor in the house?
Is there someone who can tell me why a doctor just gives a patient a 15-minute exam shuffle? Why some fail to take some symptoms seriously or fail to understand that a patient’s time is also valuable? Or fail to form a partnership with their patients when making treatment decisions?
Are patients who complain about rushed doctors who dismiss their concerns being overly critical of their medical providers? Is there another side to this story? Is there something I’m not seeing?
Please, chime in here and help improve treatment for all of us.
You’re invited to follow my personal blog at www.themswire.com.
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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 Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
About the Author
GARY SHAMBLEN
I have found, based on my 36 years of MS, we need to be our own best advocate.
Gloria Kenny
Hi
I’m in a care home
Have had MS for 26 years, and now have SPMS
Need to see neurologist to arrange to provide me with the new drug for SPMS.
Do not know when the hospitals will reopen after the Covid ,
Regards Gloria Kenny
Lesley Richards
My daughter was diognosed over a year and half ago, she saw a neurologist following MRI had an intensive steroid infusion a couple of months later and has been left high and dry since! No follow up, no explanation as to what to expect, no MS nurse nothing! Is this usual? Should I suggest she asks for a different consultant? We feel very let down by the system!
Ed Tobias
Hi Lesley,
A follow-up is certainly standard. I think most neurologists would want to see the patient about six months following that steroid treatment.
I'd suggest having your daughter call the doctor's office and ask "don't you want to see me?"
Ed
BELINDA J. MATTOS
Hi Ed. I am not a doctor, much less a healthcare professional. However, for a long time, I have felt that for-profit healthcare systems and hospitals contribute to the present trend of 15-minute doctor visits and inattentive physicians. Of course, not all doctors are inattentive, but some are overwhelmed with high patient loads and a corporate healthcare system that pressures them to adhere to "efficient" 15-minute patient interactions. Unfortunately, it appears that the primary focus of for-profit healthcare systems is to show a healthy profit margin for their shareholders (just as with drug companies and dispensaries). The patient often is not the number one priority. I have gone through three neurologists for this very reason. I am fortunate to have a great primary care physician, who I've seen for 12 years. She is very knowledgable, and she has maintained hospital privileges that enable her to visit all of her hospitalized patients. She has intervened on my behalf many times. Unfortunately, she is a one-woman practice, as she has remained outside the corporate structure, and the "specialists" do not always give her the proper respect. I am not against making profits. In fact, I love to make money. However, when it comes to healthcare, we need a different paradigm.
Ed Tobias
Belinda,
I think your observations are spot-on. I, too, have a wonderful PCP who my wife and I have been seeing for, I'd guess, 20 years. She's also solo, her office is bare-bones, and she's a wonderful physician. I've been seeing my neurologist for at least 15 years. She's also tops. My exams with them always run 30-45 minutes and I can reach both of them via email.
But, I'm one of the lucky ones. I had an excellent job which included very good insurance. That allowed me freedom of healthcare choice.
We certainly need to sift the paradigm, but I'm not wise enough to know how to shift it.
Ed
Mody
To be honest,,, my Neurologist is a professional but his dealings with me is so bad ... I can’t change him cause it’s in his hands if he wants to or not ... I’ve tried 20 years ago but I failed
I’ve seen another doctor in a private hospital but I faced the same problem ?
Karen Peoples
My neurologist is great. She is very knowledgeable about MS (involved in many studies and research papers), kind, she seems to genuinely care about her patients, the wait time is minimal, and she spends a good amount with me. So why do I want to change neuros? Defective communication! So many times I think she said one thing, but she says she did not. Or I say something and she misinterprets that. The last incident was following a horrible relapse. I was put on three days of oral steroids. Weeks later, the symptoms actually increased. She told me I could be put on IV steroids, which location did I want to go to. When I didn't hear anything a week later, my husband called them. He was told, "Karen doesn't want to be on IV steroids." Huh?? There have been several other incidences that just shake my confidence in the treatment I receive. I don't need the added stress!
Lynda Strecker
I was diagnosed w/MS in 1993 My neurologist is not bad but I never receive any communication from her office as to the need to come in for a check-up. She's affiliated w/a university hospital and probably too busy but I don't even bother to go anymore as nothing is ever really accomplished in terms of advice or even prescribing annual MRI's which I feel should be part of treatment. As someone else wrote, we need to be our own advocate and do our own research. I, too have learned more from my own research, esp. @ diet, than from any neurologist (I did try another neuro. but was not helpful). They always want to prescribe drugs which I will not take as the side effects are quite harmful. The most helpful neuro. I found was in Boston at Brigham & Women's Hospital back in 1994. I went there for a 2nd opinion and was given more helpful info and attention than anyone else had provided. I am in NY so it's not feasible to travel that distance. My question is, why is stem cell treatment not being used more frequently? I suspect that Big Pharma is behind that,i.e.$$$$$$$$. I am using med marijuana which is helpful for pain and spasticity. PT is OK but greatly limited. So, I am about to look for another neurologist who actually is helpful and attentive.We shall see.
Catherine
I am in the UK and have changed my Neurologist twice. The first kept me waiting 2 hours once, and was extremely patronising. I left my last consultation with him and sat outside his room crying with misery and frustration. I wrote a polite letter asking him to transfer my files to another member on his team, which to his credit he did very quickly. The second neurologist I changed from is based at another hospital that supply my drugs. That second neurologist went beyond rude. I didn’t leave crying but I was very close to telling him to go to hell. Instead, I wrote a polite letter to him telling him what I thought of his rudeness and that I never wanted to cross his path again. I copied this letter to my MS nurse who told me I wasn’t the first to write such a letter! I was soon transferred to someone else to sign off my drugs. Why are these people so rude? I could understand it if my behaviour was in question, but I always try to go into a consultation with a feeling of positivity and a smile on my face. I always ask the consultant how they are and try to have a pleasant conversation if time allows. I have high regard and respect for the professionals who have been looking after me, but I see no reason to even think for a minute about changing to someone else if they leave me feeling unnecessarily upset or angry.
Maria D'Amato
I have a love/almost hate relationship with my neurologist. He's a wonderful man with compassion and a good sense of humor. He spends time with me and once in a while he will explain things clearly. I never have to wait more than 15 minutes to see him.
The frustrating part(s) are that he has been vague in his assessment of my diagnosis. Everything was ruled out that would explain my brain lesions, symptoms and other abnormal test results. I've been studying MS since 2011 when a brain MRI showed an alarming amount of lesions which the radiologist suspect MS as the cause and sent me to a MS Specialist. Too many issues with her so I found my current neuro.
I have lesions that are "not typical for MS" and based on that alone has dismissed MS as a diagnosis despite everything else being ruled out.
My VEP was abnormal as was my VNG and Neuropsychiatric testing revealed cognitive deficits in all domains, consistent with MS.
I have numerous symptoms indicative of MS although I do realize other diseases can cause them, but, again...everything else has been ruled out.
My brain MRIs have not changed from 2011 until 2016 when it was evident I had a few new ENHANCING lesions. My neurologist said he consulted the head of neurology at a local University Hospital. They both agree the lesions are not real but instead, "artifact" or shadows.
The MRI AFTER that one stated, "No changes from prior MRI". TO e, that sounds like those new lesions which the doctors claim to be artifact are STILL THERE.
When I brought this up in our last appointment he verbally stated in a somewhat hedgy way, "Well, yes we are treating you with Rituxan so you have MS otherwise we wouldn't be treating you with that." Then he interrupted me and scoffed, "Don't get hung up on the diagnosis"!!! I was furious.
Since 2011 I have been in the dark as to what has caused my lesions, symptoms and life to come crashing down. I had to go on disability.
I was recently diagnosed with Limited Scleroderma and Cogan's Syndrome but those diseases don't explain my lesions.
I did get two more opinions and they "agree" with my neurologist and that I don't have MS!!! I find it curious that they all went to school together and are associates, though the different practics. It feels like I am being shunned from the truth. The anxiety and depression this has caused is overwhelming.
I just don't know what to do anymore. Note: my medical records don't indicate most of my symptoms and there are discrepancies galore. Any guidance would be greatly appreciated!
Ed Tobias
Hi Maria,
I'm not a medical professional but here are two thoughts that I've had.
Have you had a lumbar puncture? It's my understanding that it's considered the most definitive test for diagnosing MS.
Also, are all of the neuros who you've seen MS specialists? If so, maybe it would be useful to see one who DOESN'T specialize in MS to get a different perspective.
Best of luck,
Ed