Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

Most ignorant physicians - neurologists?

Discussion in 'General ME/CFS Discussion' started by Kenny Banya, Dec 20, 2016.

  1. Kenny Banya

    Kenny Banya Senior Member

    Messages:
    311
    Likes:
    512
    Australia
    From personal experience & discussions with others, it seems neurologists are the most (willfully?) ignorant of the various relevant medical fields, when it comes to SEID/CFS.
    I find this funny (sad) considering they need, what, 10 years of University & post-Uni training to get such a qualification?
    Your thoughts? Other fields more ignorant?
     
  2. Demepivo

    Demepivo Dolores Abernathy

    Messages:
    406
    Likes:
    2,228
    Older male GPs
     
  3. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,820
    They get heavily targeted by psychosomatic propaganda.

    There also might be an ego issue where they specialize anticipating a sexy career dealing with tricky brain stuff, but end up seeing MS patients all day for routine management.
     
    lauluce, Jo Best, Chezboo and 12 others like this.
  4. Old Bones

    Old Bones Senior Member

    Messages:
    808
    Likes:
    4,907
    Based on my personal experience with two Stanford-trained Sleep Specialists, I nominate this field as having some of the most arrogant, clueless and dangerous doctors for ME patients. If only we could be cured with sleep hygiene practices (i.e. sleep deprivation). Certainly didn't work for me. In fact, both times (many years apart) restricting my hours in bed resulted in bad crashes, one of which I have yet to recover from.
     
  5. halcyon

    halcyon Senior Member

    Messages:
    2,305
    Likes:
    5,388
    I'd say neurology and infectious disease have been the worst so far, ironic since those are two fields that I think this disease lands in the most. As @Valentijn mentions, I think these specialties get bogged down seeing a handful of diseases within their specialty and their minds shut off.
     
    Last edited: Dec 20, 2016
    Mel9, OhShoot, Jo Best and 6 others like this.
  6. Woolie

    Woolie Senior Member

    Messages:
    1,930
    Likes:
    14,558
    Neurology is bad, I agree. It seems they buy the psychological explanations wholesale, and wield them with apparent authority, even though they have no clue as to whether there is any quality evidence to support them.

    There are a few research neurologists/neuropsychologists in the UK who seem attracted by the "artiness" of psychological explanations. They like to write quite flowery papers on hysteria and the like, the mysteries of the mind. I think this group have become bored with how dull and descriptive brain research is (you know, you do the study and write up the results, not much room for waxing lyrical there). They seem to be attracted to more "mysterious" fields where there's an opportunity to say clever, reflective and philosophical things.

    ...ahh, back to the old days of Freud, where paralysis was an exciting and mysterious manifestation of the inner psyche, not a boring neurological deficit like MS or Parkinson's....

    I do think the human craving for mystery and magic is one of the forces that attracts people to "power of the mind" ideas.
     
    Hip, slysaint, JaimeS and 14 others like this.
  7. Woolie

    Woolie Senior Member

    Messages:
    1,930
    Likes:
    14,558
    Actually, I think there was a study about this done in the UK, and it was younger female GPs who were the most likely to endorse behavioural/psychological explanations and treatments of MECFS. I think this reflects the influence of the PACE trial on that generation, who probably got taught about it in med school.

    My own doctor is male and close to retirement. I find older doctors much less "zealous" about these things than the younger ones. More likely to take it all with a pinch of salt.
     
    JaimeS, lemonworld, Mel9 and 7 others like this.
  8. Thinktank

    Thinktank Senior Member

    Messages:
    1,260
    Likes:
    1,423
    Europe + Asia
    I nominate psychiatrists and infectious disease specialists who heavily rely on IDSA guidelines.
     
    Mel9 likes this.
  9. arewenearlythereyet

    arewenearlythereyet Senior Member

    Messages:
    1,478
    Likes:
    7,571
    I nominate the beurocrats at NICE and politicians who have destroyed good medicine by creating a non joined up money based national health service in the uk and have turned the whole thing into a circus of last minute 10 minute appointments that send you on a wild goose chase (sorry just got up and I'm Grumpy with the world).

    Also have had bad experience with neurologists .....this is a classic. "your numb fingers and toes, well the MRI scan and nerve conductivity tests show there is nothing wrong, so sometimes we will just never know the cause of these things". Turns out it's actually the medication that a neurologist prescribed me depleting my B12..... it even has a warning on the packet! Think this is just pure ignorance and Silo mentality.....seems quite common in medicine in all fields. The best "care" I got ironically was the CFS clinic who were limited by the rubbish NICE guidelines.
     
    bertiedog, JaimeS, Braveheart and 6 others like this.
  10. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,528
    Likes:
    24,594
    USA
    Neurologists, hands down, have been the most dangerously arrogant and narcissistic doctors that have ever seen.

    Not to mention rude, mean-spirited, and willing to throw you under the bus and potentially sabotage future treatment.

    Don't even get me started on this topic...
     
  11. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,820
    There's some good ones out there. But the only two I've seen since getting ME were completely awful.
     
    OhShoot, Woolie and Jennifer J like this.
  12. SuzieSam

    SuzieSam Senior Member

    Messages:
    201
    Likes:
    512
    Israel
    The first neurologist I saw, after waiting 6 months for an appointment, suffering from 3 day long migraines every other week, was a total bitch. I came out crying after she accused me of taking too much thyroid medication on purpose, saying I needed a psychiatrist and I was wasting her time.

    But then I saw a fantastic neuro privately, (who then got me on his regular books), and was determined to rule out lots of things my symptoms might have indicated. He treated me with respect and seriousness despite my long term prescriptions for antidepressants.

    For those of us with preexisting psychological conditions, this is an even bigger hurdle than for those of you who were always mentally healthy. As you can imagine.

    He moved on to a research/teaching role, but his successor is mostly OK. Not so up to date on ME, but respectful. Which is all I ask for. It's a heck of a lot.

    I learned from my horrendous experience with that first neuro to investigate every doctor before seeing them. What is their special interest? Are there patient reviews? I look into their research to check if they've covered my problem. And I try to get personal recommendations as much as possible.

    I HATE seeing doctors, regardless. Once burned...
     
    JaimeS, Braveheart, MeSci and 10 others like this.
  13. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

    Messages:
    1,082
    Likes:
    3,394
    UK
    Neurologists definitely for incompetancy and cluelessness.

    I seen one during a time when i was getting pins and needles in my hands for a while. After tapping my knee reflexes, shining a light in my eyes and twiddling my hands in a circle. She declared the pins and needles were probably down to stress :bang-head: the end.
     
    Last edited: Dec 21, 2016
  14. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,820
    Everyone knows pins and needles are from gremlins! :devil:
     
  15. TrixieStix

    TrixieStix Senior Member

    Messages:
    531
    Likes:
    879
    I saw 2 neurologists this year after suffering a severe month long PEM flare (i did not know what it was at the time though). This flare caused lots of neurological symptoms. I had never before had. Pronounced vision changes, a 24 hour episode of lower left facial palsy, widespread paresthesias, uncontrolled jerking of my head, left arm and leg, and so on.

    1st neuro I saw was nice. He ordered a brain and spine MRI w/ contrast, but no abnormalities except for a couple spots that they said were normal for someone my age (37) and someone with migraines. He also ran some blood tests. After finding no abnormalities that would explain my symptoms he told me it was obvious something was wrong but that he didn't know what and explained neurology does not hold all the answers. He diagnosed me with a "functional neurological disorder". I was frustrated but appreciated him not brushing me off or telling me it was in my head.

    2nd neuro was a MS specialist. Because I also have bladder issues, and numbness/weakness in my left leg I wanted to make doubly sure MS was ruled out as the cause of my issues. She was nice, and in the first appt after looking at my MRIs and records she was almost certain it was not MS, but said she still wanted to help me figure out what the problem is. She had an EMG and NCS done, and blood tests that had not been done before and all we came up with was a deficiency in serum copper and ceruloplasmin. We then made sure it was not Wilson's Disease and it was not. It was during this period that I on my own became aware of ME/CFS and realized that I meet all the criteria (CCC) and that it can explain all my symptoms. It was then I realized I was experiencing PEM all the time but didn't realize that's what it was. I mentioned the ME/CFS possibility to her during my final appt with her and she barely peeped a word in response. She wrote me a prescription for physical therapy and sent me on my way. Thankfully I followed my own instincts, did more research, and did not go to physical therapy.

    It is mind boggling (not really but it should be) that neither of these 2 neurologists at large city hospitals (1 a teaching hospital) thought of ME/CFS as a possible explanation for my symptoms. That I had to come across it on my own. This is the 2nd time I have gone on to be diagnosed with a serious disabling condition because I myself figured it out after doctors failed to. The first time was in 2013 and this was after 13 years of daily suffering with doctors telling me there was nothing physically wrong with me. There indeed was and I ended up having to fly cross-country 3 times to see a specialist and have major surgery at Massachusetts General. Because the diagnosis was delayed for so many years the damage proved to be permanent and I can no longer work or drive.

    Thank goddess for the internet!!! Seems some of us have to be our own doctors.

    I plan on writing letters to each specialist I have seen previously to inform them that there was indeed an explanation for my symptoms and include some info on ME/CFS. Maybe it will make a difference in another patient's life who comes thru their door. Maybe I can plant a seed.
     
    JaimeS, MeSci, Cohen2 and 6 others like this.
  16. SuzieSam

    SuzieSam Senior Member

    Messages:
    201
    Likes:
    512
    Israel
    @TrixieStix I'm really glad you found your own diagnosis in the end. I just hope those neuros end up knowing that ME is a real disease and not a useful thing to tell people to give them the brush off!

    Too many of us have been told it's "Chronic Fatigue", there's no treatment or cure, goodbye. If we're lucky enough to avoid the CBT/GET crap. Better to be told you have a Functional Neurological Disorder than get stuck with that.
     
    TrixieStix likes this.
  17. Jenny TipsforME

    Jenny TipsforME Senior Member

    Messages:
    1,136
    Likes:
    3,825
    Bristol
    Having been a psychology student interested in health psychology this rings true. There's something fascinating about these theories, even if they're essentially fictional stories. However, the impact of these stories on chronically ill women is so oppressive it amounts to institutional violence.

    I feel myself already getting nervous about a neurology appointment in January (1st ever in 19yrs ME, though I've seen good immunologist and cardiologist). I think a neurologist could get to some useful answers, even treatment, but if the appointment goes badly I could end up with a detrimental functional diagnosis and be taken less seriously than before. If I allow myself to get anxious about the appointment itself, then the likelihood of coming across as generally neurotic increases...
     
    lauluce, erin, JaimeS and 10 others like this.
  18. Kenny Banya

    Kenny Banya Senior Member

    Messages:
    311
    Likes:
    512
    Australia
    I saw a neurologist in March this year, prior to seeing a CFS specialist in May (what a relief.....).
    In short, if it wasn't for the year 2016 & the fact that we have laws & law enforcement agencies in the modern world, I would have beaten her to death in her own office, with my bare fists. And I would have done the world a favour.
    She was easily the most incompetent, rude & dismissive professional (of any profession) I have come across in my entire life.
    I gave her a very damning review on the Rate My Doctor review website. Thinking about her still angers me. I can't imagine how much damage she continues to do to other people.
     
  19. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,910
    Likes:
    12,757
    Sth Australia
    definately neurologists. The ones Ive seen were nice to me (one i saw was the head one at our states big hospital) but extremely arrogrant and ignorant. It was obvious to them I had issues as they told my rombergs test was the worst they ever seen (they missed grabbing me and I ended up slamming onto the floor).. but with that they just dismissed me and sent me on my way due to the ME/cfs diagnoses and the fact Ive found they hate it when they can see someone has an issue they dont know what to do about.

    Its like they see themselves as Gods so they dont want to know you if you have this illness (cause I think it dents their egos).
     
    Shawn, JaimeS and Zombie_Lurker like this.
  20. alex3619

    alex3619 Senior Member

    Messages:
    12,521
    Likes:
    35,220
    Logan, Queensland, Australia
    For future information I think everyone needs to be aware that functional neurological disorder is code for its all in your head. If you mention that to another doctor it will most likely be interpreted as a psychiatric issue and you might receive substandard care. Functional disorders are not always considered psychiatric, but psychiatrists usually use the term to mean a mental disorder, not a subtle biochemical disorder. Be careful with this terminology.
     
    MeSci, JaimeS, PhoenixDown and 8 others like this.

See more popular forum discussions.

Share This Page