I'm a Neurologist, Hear Me Roar — If I wasn't believed when seeking care, what chance do non-physicians have?

[SNT Gatchaman]

By Ilene S. Ruhoy, MD, PhD, neurologist and medical director for the EDS/Chiari Center at Mount Sinai South Nassau in New York.

ME/CFS and long COVID advocate on Twitter.

https://www.medpagetoday.com/opinion/second-opinions/102084

I spent some of 2014 and much of 2015 trying to convince doctors that I knew something was wrong. I wasn't feeling well, and it was getting worse. My body wasn't behaving as it used to and my energy was sapped. But my neurological examination was normal, and I did not have any "objective" event -- such as a seizure or a syncopal episode -- for the neurologists I was seeing to take anything seriously. I had a history of migraines (albeit one to two times per year) so my headache complaint, despite the increase in frequency, was attributed to that. I asked for an MRI but was told I was "working too hard," "knew too much," and was "anxious."

Note that she later expands on the so-called "normal" neurological examination. She actually had papilloedema, but no-one had looked in her eyes. This is bad medicine, but ironically moreso, given that the patient herself is a neurologist.

In some cases, when the doctor isn't really listening and a physical cause isn't clear, they may assume the issue must not be "real," but rather that it is likely to be psychological. The diagnosis of a functional disorder, a conversion disorder, or a psychosomatic illness should never be made in the first visit. Even if an exam suggests it. One thing I have seen in practice is that patients become so used to not being believed that they feign, though not necessarily intentionally, certain symptoms on exam in hopes of trying to convince a doctor something is really, truly wrong.

Personally, I'd reword that to "The diagnosis of a functional disorder, a conversion disorder, or a psychosomatic illness should never be made in the first visit."

 

[shak8]

Not doing an MRI on a colleague, can you believe it. Beyond the pale.

i think that rational thought is missing most of the time in our species, and doctors are not 'special people' over-endowed with superior brains.

 

[RedFox]

Not doing an MRI on a colleague, can you believe it. Beyond the pale.

i think that rational thought is missing most of the time in our species, and doctors are not 'special people' over-endowed with superior brains.

I used to think of doctors as especially competent because of their rigorous training and role in protecting people's lives. I've seen many other professionals mess things up. Software developers building entire systems out of cheap hacks, electricians doing work that isn't up to code, useless customer service people, etc. And chronic illness made me discover....doctors are just as human and just as fallible as everyone else.

 

[Sean]

One thing I have seen in practice is that patients become so used to not being believed that they feign, though not necessarily intentionally, certain symptoms on exam in hopes of trying to convince a doctor something is really, truly wrong.

You can see how that could play in the minds of those who already see us as malingering, attention-seeking, etc.

I used to think of doctors as especially competent because of their rigorous training and role in protecting people's lives.

And usually they are when applying known knowledge to known problems. Which is almost all clinical medicine.

Got a clean simple fracture of the arm? Piece of cake. Everybody goes home happy, with the minimum amount of fuss.

Difficulties start when they try to use that method on unexplained problems with no effective treatment. Clearly it doesn't work. Wrong tool for the job.

 

[ToneAl]

So the whole fnd ideology is useless and very harmful when missed conditions are present. The obvious logical explanation is fnd is not a proper condition at all but in the minds of the doctor. So the whole core of medicine is stinking from the inside out.
We need a revolution from education to the colleges

 

[Jonathan Edwards]

If I remember rightly the same Dr Ruhoy made some pretty strange interventions in the dialogue about craniotomy-cervical instability in relation to ME.

If it turns out she had a brain tumour various thoughts pass through the mind. I hope she recovers well from her bad experiences. I learnt this lesson first hand long ago but it keeps happening and it needs highlighting.

 

[Hutan]

Interview between Amy Proal and Ilene Ruhoy, 2021