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Why Some Doctors Dismiss Your Symptoms and What You Can Do About It

A significant number of patients that go through the MS diagnostic process experience a disturbing pattern of misdiagnoses and dismissiveness from physicians. If you were one of them, as I was, the following three scenarios might be familiar to you.

Common experiences

  1. You describe pain and one or two other symptoms to a new doctor. S/he appears to be listening intently. When you take a breath before your next sentence, the doctor interrupts and accuses you of displaying classic drug-seeking behavior and says you’ll not get a script for narcotics in that clinic. You walk away stunned and indignant. Narcotics couldn’t have been further from your mind.
  2. Referred to a neurologist by your primary care doc, you undergo a neurologic exam and oral history, reciting the symptoms of numbness, fatigue, foot drop and weakness you’ve written on a notepad so you wouldn’t forget anything. The doctor grabs a rubber mallet and taps various joints. You notice that a left knee tap produces a brisk reflex. “That’s a bit brisk,” the doctor acknowledges. “But I’ve never seen you before so I don’t know if this is normal for you.” Then with an impressive display of noncommittal claptrap, he pronounces judgment on you that it’s just stress—but you should probably get an MRI sometime—but it’s really nothing. Back to the drawing board, you mumble to yourself.
  3. Referred to a rheumatologist by your primary care doc, you describe various symptoms including pain in many areas on both sides of your body, numbness, and migraines. The rheumatologist diagnoses you with fibromyalgia and puts you on Lyrica. Years later, after experiencing attacks of worsening symptoms followed by remissions, permanent vision and mobility loss, you are referred to a neurologist for MRIs. After discovering numerous lesions and an abnormal lumbar puncture, you are diagnosed with relapsing-remitting multiple sclerosis and put on a disease-modifying therapy.

Too much focus on acute care

Who knew diagnosing chronic illness was so complicated? Doctors have always been on the front lines of that epiphany, with patients like you and I taking up the rear. Here are some excuses doctors have given for their lack.

In an article written by physician Daniela Drake, the author points out that conventional medicine is designed for acute care and fails miserably at spotting chronic conditions. Clinical settings are designed much like car factory assembly lines. Think of a busy ER where patients are triaged according to the type and severity of their injuries. Suturing, splinting and bandaging are easy fixes.

In a busy private practice setting, doctors rely on heuristics to make rapid judgments with each patient. But chronically ill patients don’t fit the heuristics and instead present with a “wild constellation” of symptoms. The most expedient solution? Send this perplexing pile of meat and bones back to the street from whence it came.

Reasons for their unreasonable behavior

In a tongue-in-cheek article by Dr. Val Jones titled In Defense of Doctors: Why We Act Like Jerks, and How to Handle Us When We Do, she explains four main reasons why doctors are jerks:

  1. We are afraid.
  2. We are hen-pecked.
  3. We are exhausted.
  4. We were probably jerks to begin with.

The fear part, Dr. Jones surmises, comes from a silly belief doctors have that they can “cheat death” with the many tools and techniques they have accumulated to save every single patient they treat. When the inevitable failure comes, they beat themselves up, risk condemnation by their peers—or worse, the most arrogant ones take it out on an unsuspecting patient.

Hen-pecking is another term for multi-tasking trivial but necessary things while trying to have a serious discussion with a patient. Someone with medication scripts to sign might walk in and interrupt, or another doctor might wander in for an ad hoc consult. The constant interruptions can change a nice doctor into a jerk—or a jerk doctor into an even bigger jerk.

Exhaustion refers mostly to sleep deprivation among surgeons and ER doctors. Lack of sleep makes anybody “irritable, moody, short-tempered, hostile—and extreme jerks.”

In a sincere paragraph of jerk-splaining, Dr. Jones points out that “…getting into medical school is extremely competitive. Candidates are ranked by test scores rather than compassion and charming personality scores. So the most successful ones are usually fiercely competitive type A personalities. If they weren’t fully-formed jerks before graduation, they become fully-formed after sleep deprivation, hen-pecking, and fear of failure.”

How to ally with your doctor

So how do you deal with a jerk so they won’t act so jerky? Dr. Val Jones provides this list—

  1. Be prepared for your visit. Bring a recent meds list, write down questions and symptoms.
  2. Be understanding of our lateness. An ill-prepared patient before you might have made us late.
  3. Be a “compliant” patient. Stick to the treatment plan we worked out for you.
  4. Find another doctor if you need to. If your doc is impossible to work with, do find another.

Hm, these are things MS patients already know! Oh, and Dr. Jones wants to point out one more thing:

“…being a jerk isn’t always a bad thing, because if your loved one needs a medical champion, then a fire-breathing monster is probably an excellent advocate!”

Food for thought.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Julie
    2 years ago

    ahhh yes. Neurologist. Latin for pompous ass, right?
    Seriously, after burning through a few, I asked my sister (who is a nurse) what was up with the attitude I get from Neurologists? She told me to consider this, they have spent 4 years in college, 4 years of medical school, 4 or more years interning plus how ever many years they study their specialty. They have spent many years in school or perfecting their skill. They have had very little time socializing so are probably socially awkward.

    I had to decide to just find a good one that would be up front and honest with me. I don’t want to be entertained, I just want to have my problems noted and tell me what can be done about them. The problem I have with my current neuro is that he will take note of my problems, order an MRI and go by those results. I once asked him if MRI’s always picked up all lesions? After much hemming and hawing and squirming, he admitted that they don’t.

    I’m at a loss as to why he told me at my last appointment that he could see 20 new lesions on my last MRI and told me I would be a good candidate for the new drug specifically for progressive patients, yet after the new MRI came back told me to stay on the Betaseron because I didn’t have anything new. Betaseron? Isn’t that for RRMS? They all speak double-talk and I’m still at my wits end over them. I guess I’ve gone on too long but I have yet to find anyone who really likes their Neurologist, so I don’t think I’m alone in this.

  • Meagan Heidelberg moderator
    2 years ago

    Hi Julie!
    Thank you for commenting as we appreciate you sharing your story with us. You are correct – Betaseron is used for relapsing forms of MS. More information regarding the medication can be found here; https://multiplesclerosis.net/treatment/betaseron/.

    You are certainly not alone with the frustration that comes along with your neurologist. Many members have expressed the same/similar opinions. Some of our community have stated obtaining a second opinion has been quite beneficial to their health.

    We hope that you’re able to do what’s best for you and your health! Thank you for being a part of our community!
    Meagan, MultipleSclerosis.net Team Member

  • potter
    2 years ago

    My story is real similar to Lisa P, I had symptoms off and on since I was 24. Started with a bladder infection off and on for a year. My G.P. thought I was a hypochondriac and told me for decades that I didn’t have MS even though I had relatives with MS and ALS. I even went through a summer of MS hug, I didn’t know what it was then. He told me I was drinking to much caffeine, I was diagnosed when I was 55 because I was having crazy pains and sensations in my arm. My G.P. thought I had hurt my elbow throwing clay and sent me to a neurologist to have it checked out. I said maybe the neuro could check me for MS while I am there. My GP said even if you have it he can’t do anything for you. When the neurologist read my records and family history he said I am testing you for MS, I’ll go ahead and check your elbow. The rest is history. Potter

  • Meagan Heidelberg moderator
    2 years ago

    Hi Potter!
    Thank you for sharing with us! We are so sorry to hear that it took so long to be diagnosed with MS. We are glad to hear that your G.P. sent you to the neurologist so he/she could help you with your elbow pains, which must have turned out to be symptoms from MS.
    We appreciate you being a part of our community!
    Meagan, MultipleSclerosis.net Team Member

  • Bettybeem
    2 years ago

    Excellent article!
    It took a few years to determine I had MS. I always had my annual physical in the summer when school was out. So my primary physician would say things like, ” You’re a teacher.”” You need more vitamins.” ” Don’t work so hard.” That continued until I woke up one December morning numb from my waist down. I was then referred to a neurologist who had been my primary physician’s mentor. After blood work and MRI’s, I finally had an explanation. This was before the ABC (Avonex, Beta seron, Copaxone) drugs were available. When these did become available, I inquired about the possibility of being prescribed one of these. I was told I wasn’t bad enough even though he predicted I wouldn’t be walking by the year 2000. This neurologist who was well known in the MS Society was never accessible, never return phone calls, never responded to questions, never treated exacerbations, never evaluated my neurological functioning or strength. I was locked into my insurance at the time. When MS forced my early retirement, I moved to Houston. After months of attending MS informational meetings to listen to different MS neurologists and to network with other Makers, I finally found my MS physician. When they requested my medical records from my previous physician. Guess What? My previous neurologist’s office never responded. My current neurologist is the antithesis of my previous neurologist. Here it is 2017 and I’m still mobile! I sometimes wonder how different my MS would be if my previous supposed MS doctor who was so well known and respected in the MS Society had provided the treatment I had so desperately needed.

  • Meagan Heidelberg moderator
    2 years ago

    Hi Bettybeem!
    We are so sorry to hear that you had such a poor experience with your first neurologist. That has to be so disheartening. MS having forced your early retirement, we are glad that you were able to find a great neurologist. Also wonderful news that you are still mobile!! Thank you so much for sharing with us and our community.
    Meagan, MultipleSclerosis.net Team Member

  • Julie
    2 years ago

    You sure were treated badly! I just hate that there are doctors like that. I’m glad you have finally found a good one and are getting the care you need.
    Good health to you
    Julie

  • LisaP
    2 years ago

    My RRMS story is number 3! After what was my first MS(unknown at the time) “flare”, I was initially diagnosed in 1993 (age 30) with Fibromyalgia. Next came mixed connective tissue disease, and finally in 2015, Lupus. In 1995, I was diagnosed with uveitis, an inflammatory eye disease.For 23 years I struggled with symptoms: pain, numbness and tingling, fatigue, balance issues etc. In 2016, I complained to my new ear nose and throat doctor of tinnitus and hearing loss in my right ear. He sent me for an MRI. He called me at home the next night and told me that the MRI showed MS. He sent everything to my (new) PCP who got me in with a neurologist in a week. Lumbar puncture and a VEP confirmed the MS diagnosis…23 years later!!! I am on a DMT and I am working hard to stay healthy and on my feet! Praying that I’m not starting into the decline of SPMS, due to such a late in life diagnosis with no DMT for 23 years. Seeing my regular Neurologist today as I’ve had a flare over the past 2 weeks. I will follow-up with my MS specialist next week. I’ve been taking lots of notes (from medical sites) and have have notes and print outs to bring with me. Staying positive and doing yoga all these years has helped me to be as well as I am today. Never give up hope!

  • Meagan Heidelberg moderator
    2 years ago

    Hi LisaP –
    We are so sorry for the delay in response. How are you doing now? Were you able to be prepared for the visit? We are glad that you’re a part of our community.
    You’re certainly not alone in the length of time it sometimes takes to be diagnosed with MS – which is quite unfortunate. But we are glad that you were finally given a diagnosis as well as a treatment plan!

    Please let us know how it went!
    Meagan, MultipleSclerosis.net Team Member

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