Switching Neurologists – Dumping Doctors And How To Find A New Neurologist

Find A New NeurologistIt’s that time again- time to find a new neurologist.

I’m not a picky person. Really, I’m not. Normally I will tolerate any kind of abuse from a doctor as long as they give me accurate information about my health and write the necessary prescriptions. However, I’m now on my third neurologist. What happened?

Most medical professionals seem to labor under the impression that neurologists are a special breed of narcissist, and sometimes I agree.

I’ll give you the highlights of my personal experience with 3 neurologists below, but first let me say that you have to try to find someone that’s right for you. You need to trust your neurologist and you need them to be accessible to you.

Would you like to hear a secret? For a neurologist to be labeled as “specializing” in Multiple Sclerosis, all they have to do is claim that they are one to whomever asks. There is no actual criteria.

If you are searching for a neurologist, request a list of MS specialists from your local branch of the National MS Society, but do not assume that self-proclaimed specialists is truly a specialist. Try to find as much word-of-mouth information as possible. Use sites like RateMDs and HealthGrades to learn more about potential doctors as well as the doctors you’re with already.

Evaluate and list important attributes when choosing your doctor. This is what I kept in mind during my search for a new neurologist:

  • Physical Location – Is it within a reasonable distance if I have to go there during a relapse?
  • Alternate Neurologists – Are there additional doctors available at the practice if my neurologist is busy or on vacation?
  • Expertise – Is my neurologist really an MS specialist by my definition?
  • Willingness – Is the doctor willing to listen to my concerns or to consider and suggest therapy?
  • Responsiveness – Will the staff reply to my calls? Can I send a message to the doctor easily?
  • Staff – Sometimes a doctor’s staff can be their best asset.

When you find a new doctor don’t burn bridges. It may take some time to switch to the new neurologist, you may have to go back to your old doctor one day, and if you find yourself in the emergency room your previous neurologist may be on-call to make decisions about your treatment. Be polite and courteous. You may find yourself wanting to tell your doctor off in a spectacular way, but try to restrain yourself. You don’t know what the future holds.

Neurologist #1

My personal neurologist history began in December of 2008 when I was randomly referred to Neurologist Number 1 after a lid specialist monitoring some eyelid spasms found lesions on my brain in an MRI.

Neurologist Number 1 officially diagnosed me and obviously loathed me from the moment we met. He doesn’t have a great bedside manner, but that’s not truly the reason I disliked him. He chastised me for having the disease and for not having been diagnosed sooner. Out of the blue, he ridiculed Native Americans. He failed to submit a prescription for me for Rebif for months. He yelled at me for not having begun treatment with Rebif while I was still waiting for him to submit the prescription. Every appointment ended when he would leave the room while I was talking to him…. he didn’t come back and I would eventually find my way out.

As this was my first experience with a neurologist I was concerned that they might all be this way. I worried what would happen if I switched to a new doctor and pissed him off. How would I switch when I would need to ask someone for a referral?

An aunt who also has MS talked to me on the phone about her doctor. When I realized another neurologist was in my area, I jumped ship. I called the specialist I had seen for eyelid spasms and asked for a referral.

Neurologist Number 2 would not consider me as a patient until they received my records from the previous neurologist. This left me in a bind – I had to tell the staff at my previous neurologist that I needed the records for a new neurologist before I could have potential access to the new doctor. I risked it, but the acquisition of medical records was a nightmare. After multiple assurances that my records had been sent I finally went in person to retrieve them. At the desk I was told that I would have to fill out a form and pay $25. Why had they never mentioned this? They offered to courier the records over, but instead I requested that they give them to me in person.

On the drive from neurologist to neurologist I looked at the logs of my 4  or so visits to Neurologist Number 1. He had not taken a single note during any of the visits. All the questions I tried to answer and symptoms I tried to list with a half-paralyzed mouth had served no purpose. He had made a single note that he wanted another MRI. There were no notes about prescribing Rebif, which might be why it was never prescribed for me by his office. I felt that I had done the right thing when I switched over. In the years since, I’ve found that medical professionals from ER nurses to my gynecologist openly despise the man as careless with patients and condescending towards staff.

Neurologist #2

Hopeful, I began to see Neurologist Number 2. He had a delightful manner and quickly put me on treatment. He even gave me a choice of which treatment to take. But his office was musty and I compulsively wanted to clean it. He refused to accept credit cards and I had to remember to bring a check for every appointment. I was concerned that his specialization in Parkinsons meant that I wouldn’t receive the best care for MS. He would never allow me to view my test results. He would only accept accumulated messages once per week – Wednesday afternoons. He worked with exam rooms open – I heard every detail of patients’ consultation during the typical 4 hour wait.

In the end, something completely different propelled me toward another neurologist.

He was scheduled to have the morning off, but his staff fit me in because I had begun to have a relapse. While he had always seemed full of integrity, this time he clearly believed me to be faking an MS attack. “You could just be holding your arm like that on purpose.” He ordered an MRI that night to see if I really had activity and told me that he would order a round of steroid infusions if I wanted, but that he didn’t believe anything was wrong. Then he told me I could just go to the ER in the future if I had an attack instead of calling his office.

I assumed he was cranky and that it would be an isolated incident. When I followed up three months later he was apparently still cranky. I was informed that there was no new activity on the MRI so I had not had an attack after all and that I really should get that possible tumor looked at that had been on my MRI reports since the first time he read one.

Tumor? What? I’ll end the suspense now – it wasn’t exactly a tumor but appeared to be tumor-like tissue in my adenoids. Benign and possibly something called Castleman’s Disease. During the process of obtaining the adenoidectomy I acquired a copy of the MRI and report for the ENT.

The first line of my MRI report stated that I had a new 6 cm enhancing lesion. I demanded to see my bloodwork and while he maintained that my liver enzymes were only double a normal level, simple math showed me that I was seven times the cutoff between normal and high. While I looked at the bloodwork he suggested taking me off Rebif because my levels had gone up (they had gone up, but only slightly).

Did he lie to me because he wanted me to feel like he was always right even when wrong? What had my other reports said that he kept from me? Why did he never mention the possible tumor before this?

My confidence was shattered and I found myself unable to trust him anymore. Lots of people at my MS Self-Help Group see a particular neurologist and had suggested her. I knew she wasn’t accepting new patients but I finally found myself on her waiting list a little more than 1 year ago. I was still uncertain of actually switching. With all of his flaws, Neurologist Number 2 seemed like such a good person.

And then I switched to Gilenya. He hated the process and he hated the paperwork. Following my first dose I had to answer questions to the pharmaceutical company. They twisted my benign answers into a complaint which required him to fill out a 2 page questionnaire. At his requirement, I took a day off work and spent hours in his office. I kept telling the staff there was no need to weigh me or take my blood pressure – “I’m only here for paperwork”. Later, after yelling “Just keep your mouth shut!” when pharmaceutical companies call, he told me that he was forcing me to have the office visit rather than answer the questions over the phone because he was not going to do paperwork for free. In fact, the questionnaire actually required no input or participation by me. This is when I really gave up on him.

Neurologist #3

Of course I’m still in the honeymoon phase with my Neurologist Number 3. So far, she’s fantastic. And while I’m claustrophobic and hate MRIs, I’m glad someone is finally going to scan my spine when the other two neurologists would not agree to do so in spite of my recurring MS Hug.  She is a nationally renowned expert on Multiple Sclerosis and takes part in studies and research. Obviously, she is informed about the latest treatments and has reasonable and intelligent concerns. I feel like I’m safer in her hands, and the staff at this office actually behave in a professional manner.

Yesterday I had an intelligent discussion with a thorough doctor. Yesterday I was able to pay for my visit with a credit card for the first time in years. Yesterday I switched to a new neurologist matching every item in my list of important attributes, and I can’t wait for my followup visit in July.

What experiences have you had with your neurologist? Do you love your doc or are you ready to switch?

19 thoughts on “Switching Neurologists – Dumping Doctors And How To Find A New Neurologist

  1. I feel so depressed when I read bad doctor stories like this. I hope this latest one continues to be decent.

    I actually have no access to a decent neurologist where I live. I wound up having to travel 5 hours to finally get my diagnosis two years ago. We have a local neurology practice, but my experiences there have been nightmarishly bad. I was originally told that I had carpal tunnel syndrome–before the one neuro even examined me–and insisted everything would be fine if I had carpal tunnel surgery. It most obviously was not carpal tunnel. At the time, I was a professional artist. He told me “it was a curse and a blessing” to be the sort of person I am. The same fantastical imagination that allows me to do my art would lead me to have a “fantastical interpretation of my bodily sensations.” The neurologist also spent a part of my appointment mimicking another one of his patients, whom he identified by name and who had advanced M.S. This neurologist thought the other patient’s walk and speech were funny. This was in connection with me being an artist–the other guy was a musician. Apparently, we creative types are a ball of neurotic laughs.

    Ten years later I went to a Neurology department at a teaching hospital 6 hours away. My symptoms had been escalating, and I still had no answers after 10 long years. I was seen by a newly minted neuro who told me M.S. was low on her list of possible diagnoses. She said my exam had been normal, when it obviously had not been. She practically shouted at me and mocked me when I had difficulty with some of the cognitive/memory questions, as if she couldn’t believe I’d actually had problems with them. I opted not to go back. At that point I had an MRI showing lesions, mostly around my brain stem. A few months later a friend 5 hours away said she’d seen a neurologist who seemed sane. He finally diagnosed M.S. Unfortunately, not only is he far away, but is also semi-retired and hard to make contact with. The only treatment I’m getting now is from my internist. It’s kind of frightening–I have a family member with Parkinson’s, and the lack of accessible neurology care is scary.

    • Ellen – you aren’t kidding – that truly is nightmarish. Frankly, it sounds cruel. We aren’t exactly overrun with neurologists where I live, but we were fortunate to have a few good ones move in within the past few years. I hope the same happens for you!

  2. i have been diagnosed for ten years with ppms. i live 15 minutes away from glasgow. they have a good hospital that deals with ms. its just a pity about my neurologist. you can just tell hes not interested in what you are saying. each time i have seen him, he just tells me to up my dosage of gabapentin. this left me really unwell. i went back to my 18mg, now i am slowly weaning myself off of them as they do nothing for me anymore. the other medicines he gave me were worse, they turned you into a zombie. i cant get any other medicine, as its a postcode lottery. if u have money you will get a chance to try other medicines like sativex, if not you are just left to rot. its a discrace, but that is how it is here in scotland.

    • That seems so unacceptable! Maybe you could contact the pharmaceutical companies and see if they could provide the medicine to you for free with a prescription? It happens for a lot of drugs here in the states, so they should do that for you too. I hope you find a better neurologist one day!

  3. I am going to be going on my 7th neurologist (8th if you count my current sleep apnea doctor who is a also a neurologist). I have Primary Lateral Sclerosis.

    Neurologist #1 Did a lot of tests, referred me to a colleague. Charged my insurance $1000 for an EMG and later I found out what he did was NOT an EMG (an EMG requires needles be put into your needles – he did not do this).

    Neurologist #2 Despite all tests for MS being negative (3 brain MRIs, 1 spine MRI and a spinal tap), she diagnosed me with MS. I questioned the diagnosis, especially due to my constant and persistent progression (wouldn’t that be “Primary Progressive MS?”). She said “we don’t diagnose people with PPMS and she told me to start injecting myself with Copaxone immediately otherwise I would get much sicker, very quickly. Also, when she diagnosed me she did it with her eyes closed, without even looking at me. I did not believe I had MS, I did not start injecting myself with Copaxone, and I moved home to live with my mother after being fired from my job.

    Neurologist #3
    He had me tested for Hereditary Spastic Paraplegia and thought I had ALS. He sent me to Columbia Presbyterian (to Neurologist #4) to be diagnosed. After I was diagnosed the MDA was suggesting I see a different neurologist (Neurologist #5). When I called #3 to talk to him about this he got very angry and a month or two later left patient practice to be a hospital administrator.

    Neurologist #4 diagnosed me with Primary Lateral Sclerosis. She was amazing – intelligent, sensitive, empathetic, understanding, etc. She answered every single question I had (and my friend who came with me also asked). She made me feel respected and cared about and understood – especially since this was such a horrific diagnosis (no treatment, no cure). At least I did not have ALS.

    Neurologist #5 Another amazing doctor. In a strange twist I found out he had taught Neurologist #4 when she was in medical school. He was my neurologist for 7 years. Loved him. He was open minded, compassionate, intelligent, and treated me with respect. I really, really liked him and miss him.

    Neurologist #6 I moved to Oregon and saw a resident at OHSU who was overseen by a new neurologist (recently hired at OHSU to oversee their ALS/MDA clinic). This neurologist saw me for about 5 minutes, changed my diagnosis to HSP (because he said there is no bladder involvement in PLS, which is not true). He dismissed me, summarily re-diagnosed me, and ignored my communications with him regarding my feelings regarding his re-diagnosis. I had to go to his boss in order to get assigned to a different neurologist who will be my 7th neurologist. I won’t know what she is like until I meet her later this year (or early next year). She is coming on board at OHSU late this summer or in September.

    My sleep apnea doctor who is a neurologist (but only specializes in sleep apnea) is wonderful and I really like her.

    My friend who is a doctor (a Chief of Infectious diseases for a high profile organization in a big city) does not like her neurology colleagues. Neurologists seem to have some serious personality defects. Horrific to experience as a patient.

  4. My Neurologist moved over 100 miles away. I am looking for a new doctor. I can’t find one with positive patient feedback. Please help me find one. I have nerve problems with my legs. I live in Pearl River, NY which is in Rockland County NY

  5. I am totally frustrated with the medical field. my neurologist of almost thirty years only works twice a week and his office never answers or replies to calls. several are not taking new patients and the others are narcissistic. ..what do I do now…please help!! this field seems to be so specialized they do whatever they want…at no concern for anyone but themselves

  6. My first neurologist prescribed Keppra after hearing a friend describe having witnessed a seizure and I told him what was happening in other areas. Said with the fractured skull I’d had as a kid it was obviously temporal lobe seizures. Keppra (generic brand, but that’s what it was) was like being drunk. Fell over a lot, couldn’t think, couldn’t function, remember things, had a new experience of falling and shaking but wasn’t a seizure because I remembered it. Kept taking the drug and tried to communicate it to the doctor in my follow up. His response was that in all his years of practice no one ever had a bad reaction to kepra and therefore the answer was to double the does. Things got worse. A friend whose dad was a doctor in another country told me to get off it as I was likely allergic and my brain could be swelling which was very dangerous. In my fogged out angry brain I was able to sort of understand and began cutting down on the medication *very* slowly and eventually got off it. Then went to a different doctor at a major university. By then, my medical records were so hosed they began to doubt I had seizures at all. They did a few tests and I found someone to watch my kids so I could stay in the hospital. It was supposed to be for a week, but they did it for three days and sent me home. Then I had to make the one day trip back to the other side of the state *again* for a 3 day ambulatory EEG. It was too hard. I couldn’t find people to watch my kids anymore. The one time was all I’d had, and they’d sent me home early! So due to travel, I asked to go to a nearby neurologist. I explained I had no babysitter. Since I was now afraid of medication, he just gave up. That was that.

    The problem is, I kept having enough seizures to keep me from driving, which is a real problem (that is also now causing legal problems). I went back in 2015/2016. I asked if I could audio record (on phone) as I have memory problems. He said “ABSOLUTELY NOT”. First red flag.

    He only wanted to give *one day* ambulatory EEGs. The hospital used fingernail polish, then glue, and then fingernail polish again to remove it. I lost almost all my hair. Due to a lot of other health problems and the fact I had several bad experiences with doctors during the next two weeks while I wore a scarf on my head trying to soak the very large chunks of glue off (before they broke off over 18 inches of hair, leaving bald spots and some chunks that were only 2 inches.) I started hiding from people and became resistant to the idea. I knew ordering one day EEGS over and over wasn’t to catch seizures, it was to try to deny them. He wouldn’t even look at the MRI CD the people who’d done it said he’d need to look at (not even when I insisted). That’s about the time I discovered that the first neurologist had committed “medical malpractice” by doubling my dose. Unfortunately, the statute of limitations had expired. I confronted my then (and until recently now) neurologist about covering that information up.

    My life had been ruined for years at this point. Ruined. I can’t (and couldn’t) remember things. I can’t drive, which cut me off from college. I couldn’t get help because he was playing games with my records.

    I needed a letter stating that I couldn’t drive for a court hearing. He wrote “I *was* ____’s neurologist. ____ states she has seizures. If you have questions call my office at ___”. Recognizing he was just trying to create problems for me because I’d been rude to him (although honest) said, “I need *your* opinion, not mine and if you don’t think I have seizures, then say so and let me drive.” His office called and said he no longer wanted me as a patient. His receptionist sounded every bit like a snobby teenager telling off someone at the bottom of the totem pole and she finalized it with “He doesn’t think you have seizures” (But he wouldn’t say so officially! Maybe because he’s not basing it on anything real and knows I really do have them as he’s heard eye witness accounts, I don’t know).

    So now legally I have seizures and I don’t have seizures, depending on which thing is least convenient. I have memory problems, I have traumatic brain injury, but none of it is being addressed. I have other issues as well. I know I should have “played the game” of pretending the neurologist wasn’t terrible, but it’s so awful.

    The games these guys have played with my health and ability to be productive.

    It takes months (sometimes a year) to get into a new neurologist on this insurance and now I’ve got no one to write whether they’re going to just einie meinie miney moe out a decision on what current belief they’re going with today.

    Neurologists here know each other. What chance do I have?

    *Regular* doctors around here don’t turn each other in for the things they do. They want to keep referrals and not be the bad guy and not be involved in something time consuming, you know?

    I do also wonder what’s the point as that any new neurologist is going to look at that biased stuff and incorrect stuff. You’re not even a person to them.

  7. I have had similar experience with the medical care offered in the military. (I call it the “ping pong syndrome”Something is wrong, but the doctor either works with me, or spends time attempting to prove themself. Ok doc, you went to schooland read books. BUT I have had this problem over 60 years, experienced what the warnings are that trouble is coming. I don’t claim to advise someone else what to take, but I know my body. Better than a doc that sees so many patients they can’t keep track which one has exactly what problem. And they dont like their time wasted, although your time is theirs to waste. Sometimes its worth pointing this fact out. Book learning is a good base to start, but thats all it is. They have to listen to what the patient & patient’s friend/family has observed. Putting her knowledge together with my observations can be beneficial, but try to find a doc that has learned how to listen and put some value in your contribution.
    I have had seizures nearly all my life. After my first baby came, I noticed that the day before my monthly period, I would have a blackout. I made sure my Rxs were taken regularly, especially then. But doctors just dismissed this as a coincedence. Until I responded, “every month for over 20 years, and it’s all coincedence?” Putting it this way, she wouldn’t say it’s still not possible, but she did think about it.
    I find humor is a good way to deal with it. A bit twisted sometimes, but laughter is better than crying. Waking up in the morning as I camee out of a seizure, I found a stranger in bed with me. Or so I thought. It was one of those faces “I know him from somewhere. Where do I know him from?”
    After I came back around, it hit me. He was my husband! I had only known him for around 15 years, 2 children had been born to us! But I couldn’t place him. I gotta laugh at things like that, and so can you.
    Surround yourself with friends & family you can trust, then on bad days, remember why they are in your life and trust them for guidance. (Not unlike the blind have to trust their service dog.)

  8. That makes sense to not only look for a close neurologist, but to look for a practice with multiple doctors. That way even if your doctor is out, you can receive service. And of course, finding a doctor that isn’t far away saves time and money in the fo http://www.ntxneuro.com/ rm of travel costs.

  9. I have had four neurologists in five years since my MS diagnosis which I’m not always 100% confident in anyway and am working on a blog about living with MS without doctors. Whoever wrote that neuros have some personality defect is right: I believe they hate us patients. That has been my experience and I’ve sworn them off. THe one drug that want me to take has (Copaxone) been fully disproven by the NIH to have any efficacy regarding MS whatsoever. My last neuro fired me because I refuse to take the meds and don’t respect her “Super Specialist” opinions. Usually she pawns off patients on the nurse. This person is quoted in the MS Society newsletter regularly. She hates sick people. Run. Neurologists do not want patients to get better. Have you ever had a neuro explain your MRI results to you? Yeah, me either.

  10. It’s good to read your process of finding a neurosurgeon. Reading about the attitude of the second doctor you saw made me cringe. When my wife starts looking for a doctor for her MS, we’ll be sure to find someone a lot kinder than that.

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