Things to Know If You’re Thinking About Leaving Your Neurologist
If you’re a member of the baby boomer generation, or if you just like the music of the 1960s and ’70s, you probably know Paul Simon’s “50 Ways to Leave Your Lover“:
“‘The problem is all inside your head,’ she said to me. ‘The answer is easy if you take it logically. I’d like to help you in your struggle to be free. There must be 50 ways to leave your lover.'”
That sounds similar to the lament of many people with MS who want to leave their neurologist. Maybe you have a doctor who said your symptoms are all in your head, or they don’t sound like MS, or you’re too old or too young to have MS. And you’re looking for any way possible to leave your neuro.
Unfortunately, there aren’t many ways to do it — certainly not 50. And when you take into consideration insurance or national health service requirements, your location, and the limited number of neurologists who really know about MS, leaving your neurologist might be even harder than leaving a lover.
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There’s obviously a need for information about when, how, and if to change neurologists, so I was excited to find suggestions in the place where one can find information about how to do almost anything: YouTube. The video is produced by Dr. Aaron Boster of the OhioHealth group, a nonprofit, charitable, healthcare program connected to the United Methodist Church. I’ve never been treated by Dr. Boster. I’ve never even met him. But he tweets (@OhioHealthMS) and posts to YouTube prolifically, and I’ve read great reviews from some of his patients. Dr. Boster seems to be one of those neurologists to whom you would run, not walk, if you were going to leave your current neuro.
Things to know before changing neuros
Dr. Boster lists several things you should know before deciding to make a change:
- First, determine whether you really need to change neurologists. See if the two of you can have a real conversation about your concerns and treatment expectations. Try to speak honestly, as if you’re talking to someone with whom you have a personal relationship, because that’s how doctors and patients should relate to each other. (I wrote a column about this a couple of years ago.)
- Consider getting a second opinion. Your neurologist shouldn’t feel threatened by this. It’s your body and your treatment, so if you’re uncertain about your doctor’s advice, you should ask another.
- If you’re going to change, you need to be in charge of all of your records. This includes treatment notes, lab results, MRI images — everything your current doctor has. Carry them by hand to the new doctor. This, Dr. Boster says, is a must.
- If you’re being treated with a “chemo” type MS medication, such as Ocrevus or Lemtrada, it’s a special situation. These are long-term, complex treatments that require what Dr. Boster calls a “warm handoff.” Your current neuro needs to speak with your new doctor, one-on-one, about your treatment before you move from one to the other.
- If you have severe spasticity and have a Baclofen pump implanted, the situation is also special. You can’t allow that pump to run dry. Again, a warm handoff between doctors is required.
Have a look at Dr. Bostor’s video to get all of the details:
What’s your experience?
Have you contacted another neurologist for a second opinion? Have you changed your neuro? Do you have any tips to add to what Dr. Boster has suggested? Please share your comments.
You’re invited to visit 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.
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Jay
Kudos.
Paul
I’ve been following Dr. Boster on YouTube for quite awhile and have learned more from him about my MS than I’ve ever learned from anyone else that includes my neuro. The guy is AWESOME!!
Susan Davis
I agree. I’ve just changed neurologists because of lack of care of him and his staff. I had a scheduled appointment and a relapse at the same time. His staff cancelled the appointment for an unknown reason, could have been a computer glitch for all I know and I begged to come in. They put me off 7 weeks. By then I could barely walk and all I got from him when I explained all of this was basically shoulder shrugs and nothing else other than MRI that showed new lesions since 6 months earlier.
Roslyn Corby
Hi. Thanks for this thoughtful offering and invitation to share the patient side of neurology. I’ve been to five neurologists since my diagnosis in 2013 and each one has had zero interest in me as a human being who is ill. FIVE. Men and women, 3 clinician- researcher- profs (this model is likely part of why they’re checked out) and two neuros. 3 of these five called themselves MS Specialists which is why I sought them out. One was super enthusiastic about the Paleo diet as a cure and had me collect all of my urine for 24 hours to test it for heavy metals. I pass every test doctors put before me and I ace them all, even the MRI (I have some lesions but not many and never new ones). All but one neurologist insisted I take Copaxone as I tested positive for that disqualifying virus for Tysabri. I live in the Los Angeles area and have seen university attached neuros and independent docs. Two insisted they had to diagnose me as having RRMS, even though my actual diagnosis is SPMS, so my insurance company would cover the Copaxone. This is fraud! My symptoms do not remit, ever. I’ve likely had the disease since at least 1993. My last neuro, who refers to herself as a “Super Specialist” refused to provide me patient care unless I agreed to go back on Copaxone. And for the record, Copaxone aggravated all of my MS symptoms and I hatched some new ones. Copaxone days had me confined to a recliner, choking a lot while and becoming increasingly incontinent. The Super Specialist is not so special, alas. She is however regularly quoted on the National MS Society website, proclaiming “patient choice.” This woman had an actual temper tantrum during my visit (my husband witnessed it too; we were shocked). She had to leave the exam room to compose herself. (Isn’t needle fatigue common? Maybe she could have asked if I was feeling depressed? She did not. She had little to no curiosity about my health or health choices. She let her nurse finish the office visit.) So I ask you: Why would I go back? Why would I trust them? Or you? I don’t take DMTs as I’m loathe to find scientific evidence by way of clinical research studies that prove these agents do anything to change the disease course. I cannot find compelling evidence of this claim in the extant science. So, you asked for questions, here you go: What’s an intelligent and engaged MS afflicted person like me supposed to do when the main thing these physicians seem to want is silence and blind compliance, not the “collaboration” you assert is possible. That has never been my experience with a neurologist; their game is obedience, no questions and get out of my office. Despite my best and earnest efforts I have only been treated rudely and dismissively by people whose life work is this discipline. So I don’t go anymore. They can’t help me, it’s been made clear they don’t want to. I don’t want to talk to a neurologist at a cocktail party, assuming I could even get out for such a thing but- I’m alienated. I don’t trust you folk and I’m not convinced you have the individual patient’s interest, best or otherwise, in mind. I also don’t buy a lot of your science. And I spend a lot of time in the NIH database reading studies, so, yeah, I’m not stupid. I’d like a neurologist to explain the ethics behind still pushing glatirimer acetate on patients when an aggregate NIH study from 2009 or so determined what while it *might* have some relevance for the brand newly sick, the NIH determined Copaxone has no efficacy whatsoever for people with MS. I can find the citation but, you know, you can too. So where do I find a kind, non-bullying neurologist? Maybe only in some bad dream. Thoughts?
Ed Tobias
Hi Roslyn,
I'm very sorry to hear about the way you've been treated.
I can only say that I've been very fortunate to have had a true neurologist-patient partnership with my doctor for more than 15 years. My treatment has always been a joint decision and her philosophy is to hit MS with the big guns, unless the patient chooses otherwise. When I was diagnosed, in 1980, there were no DMTs at all. When Avonex became available I began being treated with it...so I know about needle fatigue. When that happened my neuro switched me to Tysabri, which I used until my JCV score became too high. Then I moved to Aubagio and, finally, to Lemtrada. Each of these DMTs has helped me, some more than others.
By the way, most people are JCV positive. My neuro believes that, with careful monitoring, Tysabri can be given to JCV positive patients for a limited number of years. If a neuro won't even consider Tysabri for anyone who is JCV positive I wouldn't think very much of that neuro.
If you'd like to contact Dr. Boster you can reach out to him via Twitter. I'll bet he can suggest the kind of neuro you want and need in the L.A. area.
Good luck,
Ed
I
natania nunubiznez
I have had similar neurologist experiences, although perhaps not as harsh as your temper tantrum one. As a person with a very demanding and questioning disease, I research many aspects of MS, and bring them up to each new neurologist I see. They have an agenda, which is whatever DMT they are prone to toting. I am also not on any DMT, as I want something that is going to help my body, rather than deplete it and its cells, AND the reserves that they have left. I choose not to be also immunocompromised due to medication.
I am looking at two things that do make sense:
stem cells- which are on 2nd phase trial at the Tisch MS center in NYC-- I have my fingers crossed that this will be available in a timely manner.
I am also looking at high dose Biotin, which would help with remylenation.
these make sense to me.
And yes, diet, yoga and even ayervedic smoothies with adaptogen herbs are part of my routine. I choose to rely on myself and research, because my agenda is getting better. Big pharma and the neurologists I've seen seem to be focused on making money and not listening to me. It is disheartening. But I know what I am doing.
It looks like you do too. Keep fighting.
Linda Stolarik
I have had ms for many years, and I really get what you are writing.
I am so sorry that we are both in this situation.
May God help us both.
I wish you the best, my friend.
Mare
Been to 8 neurologists. The only one with compassion was the last. A NYC neuro. Why iisn’t HSCT offered as a 1st choice. DMDs are useless. I am in Puebla right now. One more weak of neutropenia. Then back to the states. I got immediate relief after 1st chemo. First time in 3 years I can flex my right foot and bend knee. Gone: 10+ constant pain, fog, weakness, blue, swollen legs and feet. After about 10 years, the Neuros watched me wilt like an unwatered flower for 3 years.Fell down the rabbit hole to SPMS. Yes, HSCT is 100% if treatment is done upon diagnosis. Honestly, I am so angry. By the way, Dr. Burt published several reports in Medical Journals that will show the true stats.
Cher Wirth
You are truly a gift from God Dr Boster. Thank you.
Christian Blanchard
I left my neurologist in the middle of an appointment. Pay cash and you can do whatever you want.
Kim
Dr. Boster kicks ass. This video is very informative and I hope that it helps many.
Anon
Lets not put Dr Boster on a pedestal please. He cancelled 3 appointments in a row on me.
Terri
I changed neuros to see Doctor Boster!❤️ Best decision I ever made about my MS treatment!
Marla Hop
Howdy all...Ok I will NEVER leave Dr. Cowboy Boot wearing Boster.. This man keeps it all the way real. He’s just as passionate about kicking this in the you know what as we are.. I have told him in a not so nice tone that if he decided to leave we would have TROUBLE TROUBLE.. Love this man ;-)
Stacey Guenther
I feel blessed because I have a great neurologist who listens to me. He seems to know a lot about MS and understands all the symptoms, even the depression and anxiety. He was very empathetic about my bladder issues, spasticity, memory issues, walking problems, memory and cognitive problems. He does his best to help me.
I’m worried about what will happen when he retires and how I will start the process of finding a new neurologist. I’m currently on Ocrevus for Primary Progressive MS, and as you said, there needs to be communication between the old doctor and the new. I don’t know how old my neurologist is so hopefully he has a while before he retires, but it is something I worry about, and I do worry about a lot living with MS.
Shakira Perez
Hello, I work for a mental health agency and I have a patient who is really struggling with her current neurologist. This patient has a history of medical trauma and is diagnosed with epilepsy, GAD, and depression. Her current neurologist does not make her feel welcomed or has any compassion towards her or medical trauma and because of this, my patient will avoid going to appointments or have a lot of anxiety leading to the appointments. She has been trying to obtain a new neuro, however her current neurologist has said they have to release my patient in order for her to get a new one and they do not want to release her. I am just wondering if this information that is being told to my patient is true? I figured if anyone would like to switch neuros, their current one can not stop it. Has anyone dealt with this from their provider before? Any tips would be helpful, thanks!
Ed Tobias
Hi Shakira,
Thanks for reaching out. I've never heard of a doctor telling a patient that the doctor needs to "release" her in order to me seen by a new doctor. In fact, I read stories from MS patients all the time about how they moved from one neuro to another until they found the right fit. It's likely that the old neuro will require the patient to sign a release before the current doc will release her records to a new doc, but I'm sure you know that.
You could also check with the medical board in your area to see what they have to say about this.
I'm sure your patient will appreciate the extra mile you're going to help her. I wish her well.
Ed