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Thread: Would a neurologist actually not know what dysreflexia is???

  1. #11
    Senior Member craig's Avatar
    Join Date
    Jul 2001
    I am sorry it so hard to get a good neurologist however I used dr. Martinez at the Univ/Miami and he is pretty good
    my name is craig I am a 34 post c7 SCI and a 59 yr old man so I have some input on this subject. I just started using nitro pills when my dysreflexia hits so I have whole new world. I was using 2% cream for several years but I had a blood clot in my lungs and after that I was given nitro pills plus some blood thinners I have used the nitro 2 times in the last 6 months before this I was hospitalized for dysreflexia.
    I'm all screwed up on pain killers so I don't know how much sence...........I just do not want to die, yet.

  2. #12
    I've dealt with some intelligent, skilled, caring physicians over the years. But I've also dealt with specialists who were obviously incompetent. I met one neurologist who barely seemed to understand the basics of spinal cord injury at all. But she understood billing, that's for sure, billing Medicare $400 for a useless consult, and referring me for a fairly pointless MRI.

    I do wish the medical profession instituted stricter quality control, e.g. through stricter certification tests, than they have now. There are some doctors out there that definitely shouldn't have licenses.

    I'm speculating here but perhaps some neurologists mainly deal with factitious, litigation-oriented disorders. Some neurologists just aren't prepared for complex cases like SCI. I don't know, I just wish licensing and certification tests for specialists were stricter than they are now.
    Last edited by xsfxsf; 08-15-2014 at 09:14 PM.

  3. #13
    I went to a neurologist who stated that he was not SCI oriented but I was presenting new symptoms and my team wanted a full neuro work up to eliminate any organic possibilities such as MS. Locally he's considered one of the best and seemed to deserve the reputation but was up front about his lack of SCI in-depth knowledge. So it doesn't surprise me but I've found they tell me when they are out of their comfort level.


  4. #14
    Senior Member ~Lin's Avatar
    Join Date
    Nov 2011
    Indianapolis, IN
    My main disability is a rare disorder, and I expect Drs to not be familiar with it. But nothing pisses me off more than a Dr who claims to be familiar with it or know what he's talking about when its clear he doesn't. One time in the ER my boyfriend snapped at the Dr "why don't you go google Ehlers Danlos Syndrome and then come back and talk to us" because the Dr was being such an ass, he angrily replied that he knew all about it... And then followed that up with a few questions and statements that showed he had no idea what he was talking about. Its downright scary. Think about all the newly diagnosed/injured people who may be being told dangerously incorrect info by Drs who refuse to admit when they don't know something...

    And I also thought he was probably mixing up autonomic dysfunction with autonomic dysreflexia. I have autonomic dysfunction.
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

  5. #15
    I am sorry you have not had a good experience with certain neurologists. It is not all their fault as I hope the following may point out.

    Please permit me a comment on what would ensure better education of neurologists in issues relating to Central Pain. We could of course require that Adams and Victor, the bible of neurology, devote a large section to Central Pain. This would be a start. I would suggest that the remedy mentioned by some of greater regulation is theoretically a good plan, but education is where we need the money. Regulators know nothing about Central Pain. They cannot help us very much.

    The realities of regulation today seem to indicate that like all government regulation, there is a tendency to spend a lot of money without equivalent result. The burden of education is likely to rest and remain on the schools and residency programs which educate our doctors, not on the regulators, who are not inherently designed to educate, but rather to attempt to determine who has been educated.

    Your post seems to reflect the common misconception of the public that it is licensing and regulation which guarantee competency. In my own experience, that is no longer the case, if it was ever in fact true. I would like to make a case for more money for quality residency programs, with better pay for faculty and less requirement that faculty be part of some HMO type arrangement which is more profitable for the hospital administrators. I would also like to see the rotating internship year reinstituted prior to residency, to give docs an exposure to various disciplines they will need in their residency. I would also like to see the fellowship programs brought back.

    The regulators have combined with administrators to create a problem, not a solution. The extreme salaries of regulators, reaching a million dollars a year just to administer testing, and the financial interests of test designers, whose competency in test design may be owed to psychology and not to medical training, has created a bigtime industry.

    Medicare has signed on to pay less money to those who do not wish to participate in the type of testing that is now going on. A significant trend is "Practice Modules" which involves having patients complete questionnaires. These are not presently designed to educate the doctor so much as to analyze him. So called Maintenance of Certification includes things such as "practice modules" which requires intrusion on patient privacy and surveys, which may be fine in marketing venues, but really have nothing to do with medical expertise.

    Time consuming handing out of questionnaires and testing for practice modules may actually interfere with the time needed with the patient or for studying medical journals.

    My point is that regulators do not guarantee competency. The main factor is in selection of good individuals for training and more importantly high quality education during residency, with time for fellowship where indicated. The medical fellowship was done away with under Richard Nixon in favor of what was called "regional medical programs". These were eight divisions across the country who were supposed to educate doctors about the leading causes of death, which were heart disease, cancer and stroke. After five or six years when it was evident regional medial programs did no good, the whole program was defunded. However, congress did not reinstitute funding for fellowships, which was the traditional way for smart residents to get further training and do research. The Fellows hanging around the department always inspired and educated the residents. Today, the fellows are gone and the faculty are burdened. Our residents are at a disadvantage.

    Today, the regulators are not better. They represent an even more burdensome thing for docs who wish to practice medicine. The money is used by states to fund various programs, but most such programs are not educational in nature. Perhaps subspecialization can help. Yet, one suspects that training on pain must begin clear back in the early years of medical school and not be relegated to the narrow education of a few pain specialists, not that they do not perform a valuable service. As to solving pain, we need money to go to research institutions and to NIH/NIDCR for the hard work required. It is that simple.

    A well trained resident has no problem with licensing. If he is tested in his/her field, he should have little problem with exams. What he needs is more time to stay current, not more papers to fill out.

    How to bring down costs of medicine? Get rid of excess administrators. When I graduated, administration took 2% of the medical dollar. Today, administrative costs are around 40%. The Affordable Care Act required that HMO's and insurers not take more than 20% or a penalty had to be paid. The regulators apparently did not cut back on administrative salaries. Instead they just paid the penalty. A solution to education will not come from administrators. It will come from the faculty who train our doctors and residents. If we require them to make money, they will not have time for teaching.

    Our money today can buy us marvelous buildings with marble floors and expensive art displays on the walls, with administrators with modern offices and marketing ads on the radio touting the "top" status of some hospital. What it cannot buy us sufficiently is TIME with our doctors. We are processed, coded, and entered, but not always cared for in an intelligent way. For that, you need time. The face of medicine today is gorgeous, but the head behind the face is frantic, tired, and just trying to figure out what the system is going to do next.
    Last edited by dejerine; 08-18-2014 at 12:45 PM.

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