Things to Know If You’re Thinking About Leaving Your Neurologist

Kudos.

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!!

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?

You are truly a gift from God Dr Boster. Thank you.

I left my neurologist in the middle of an appointment. Pay cash and you can do whatever you want.

Dr. Boster kicks ass. This video is very informative and I hope that it helps many.

Lets not put Dr Boster on a pedestal please. He cancelled 3 appointments in a row on me.

I changed neuros to see Doctor Boster!❤️ Best decision I ever made about my MS treatment!

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 ;-)

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.

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!