Most ignorant physicians - neurologists?

[alex3619]

PS A link to a paper discussing functional neurological disorder as the new name for conversion disorder, which used to be called hysteria:
http://bjp.rcpsych.org/content/201/4/253

 

[TrixieStix]

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.

Thanks that's good to know. This particular neurologist did not use it in that manner, but still good to know.

 

[SuzieSam]

@alex3619 Shocking! But totally NOT shocking how medical professionals who are not psychiatrists believe they are qualified to slap this kind of diagnosis on patients!

They can't uncover a biological reason for your symptoms, so it's psychosomatic? Assholes!

There are certain signs and symptoms that a well-trained and experienced psychiatrist can identify. True conversion disorder isn't common.

I was seeing a psychiatrist regularly, whose expertise I respected, when I got sick, (years of depression, well controlled with meds). At each checkup, especially if it's a different doc, I ask if they're still sure it's not all in my head...

The answer is always absolutely not - they're sure it's not psychogenic. The only specialty I've seen that's adamantly sure, and bloody qualified to say so!

 

[SuzieSam]

I vote my GP and gynaecologist as the worst doctors. My testosterone and DHEA blood tests came back as zero a few years ago. Neither of them thought it worth mentioning to me, or doing anything about.

My GP - a woman in her 50's who should know something about these things for her own sake - asked me why I thought it even mattered. I was speechless. She had no idea what DHEA did in the body. I was SO angry.

My gynaecologist was useless. And the endocrinologist/gynaecologist specialist just made my symptoms and health worse! While being an insufferable, paternalistic, overbearing know it all.

 

[alex3619]

They can't uncover a biological reason for your symptoms, so it's psychosomatic? Assholes!

That about sums up an entire subset of psychiatry, psychosomatic/psychogenic medicine.

True conversion disorder isn't common.

Conversion disorder is an hypothetical disorder and has never been proven. Its presumed when it meets some unvalidated checklist criteria. This is one diagnosis that should forever be removed from psychiatry. The got rid of the rest of the Freudian/fraudian babble, why not this?

 

[Hugo]

Have no experience of psychatrist but where I live we have some awful narrow minded people in that field and one who is extremly vocal about ME being a psychosomatic disease in media.

Neurologist could be bad but my experience is not so bad. One was rather bad (not very friendly) but not terrible (he just sent me to check for a rare illness that I didnt have), the one I met there was rather nice but gave me advice that I should excersice. Since I didnt visit him for ME it didnt matter to me that much. The third one I met was rather good and thought that ME could be somewhat similair to illnesses he saw after swinflue shots. He checked for MS to exclude that.

I would say that the worse I met have been one doctor with specialization ear, throat and mouth. Alson one infection doctor was terrible (she was extremly patrionising but for some reason still gave me prescribtions for what I wanted and a dozens of other medicines that I didnt want). The first generall doctor was terrible she just called me a hypocondric, but I met some good ones after her.

 

[Dmitri]

The last neurologist I saw wrote "somatoform pain disorder" on the diagnosis list. He failed to identify the cause of my pain, therefore he must ridicule and endanger me with this label. The frequency that this happens with is ridiculous. There are cases where it has led to death https://www.theguardian.com/society...ticises-colleagues-cancer-death-hypochondriac

They can't uncover a biological reason for your symptoms, so it's psychosomatic? Assholes!

https://en.wikipedia.org/wiki/God_of_the_gaps

 

[SuzieSam]

@Dmitri I really feel for you - it makes me furious! Especially since they write these things, then leave people dangling - what are you supposed to do for pain relief if this can actually be the case? (No idea if "somataform pain disorder" is a real thing or just psycho babble crap).

If pain can really be created by a person's subconscious is it not still pain that needs to be dealt with, just as if it's caused by an infection or nerve damage? Why is "somataform" a pejorative term?

Do neurologists refer people for therapy or what? Just slap a label on and say goodbye, not my problem, I'm guessing.

Sheesh. Ha! And if a person goes for therapy following this diagnosis, but doesn't agree with the label, they're resisting reality and are firmly in denial. And this, my friends is CBT and GET!

 

[Dmitri]

@Dmitri I really feel for you - it makes me furious! Especially since they write these things, then leave people dangling - what are you supposed to do for pain relief if this can actually be the case? (No idea if "somataform pain disorder" is a real thing or just psycho babble crap).

If pain can really be created by a person's subconscious is it not still pain that needs to be dealt with, just as if it's caused by an infection or nerve damage? Why is "somataform" a pejorative term?

Do neurologists refer people for therapy or what? Just slap a label on and say goodbye, not my problem, I'm guessing.

Sheesh. Ha! And if a person goes for therapy following this diagnosis, but doesn't agree with the label, they're resisting reality and are firmly in denial. And this, my friends is CBT and GET!

And if the doctors are unhelpful and have no answers, instead choosing to put blame on the patient by calling them crazy, the patient has no choice but to scour the internet for what the issue could possibly be. Then these same doctors have the audacity to further label them "cyberchondriacs" (https://en.wikipedia.org/wiki/Cyberchondria) or to attack them for using "Doctor Google".

According to this, somatoform pain disorder is "pain disorder exclusively related to psychological factors". Somatoform disorders are not real, testable, or falsifiable, which puts them into the realm of pseudoscience. It is about as valid an explanation for illness as demonic possession.

 

[alex3619]

No idea if "somataform pain disorder" is a real thing or just psycho babble crap

Anything "somatoform" is unproven. Its presumed based upon theory and theoretical checklist diagnoses. So there is a remote possibility its valid, but the history is one of total failure in substantive validation.

 

[alex3619]

Somatoform disorders are not real, testable, or falsifiable, which puts them into the realm of pseudoscience. It is about as valid an explanation for illness as demonic possession.

Yep. Or witchcraft, or any other whacky theory you could mention. The difference is these ideas entered the medical lexicon and became widely accepted because of Freudian psychiatry.

 

[Zombie_Lurker]

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...

When I first met him, the one and only neurologist that I have ever seen seemed charming, friendly and very personable. It turns out that he was just like Gingergrrl describes the neurologists she has seen. Not only was he the worse doctor I have ever seen, he was the most dishonest and ethically challenged.

 

[Cohen2]

My worst experiences have been with Gp's. They think if it doesn't show up on a full blood count or liver function then it's depression. I must have seen 15 Gps since having ME and none of them have known anything about it. I think they just use it interchangeably with depression.

The one neurologist I saw rushed through the appointment and told me he didn't find anything. When I looked at my records I saw that the letter he had written to my doctor he said hethought I might have a pale right optic disc. Which I've been reading about and seems to be pretty serious.

 

[Braveheart]

Older male GPs

Yes. And in the UK younger male GPs and younger and older female GPs.

 

[SuzieSam]

I can hardly believe that yesterday I spent nearly 2 hours (!) with a doctor and didn't get that frustrating cognitive dissonance between the sensible, progressive medical wisdom I've read on-line, and my real-world experiences.

I knew from personal recommendations that he would address my thyroid, adrenal, estrogen, progesterone and B12 problems in-line with my reading and long held desires. But - wow! Seeing a doctor who takes this in stride, doesn't act like I'm crazy, actually sees this every day...

I asked him about conversion disorder, and he said it's nonsense - an ego-centric, lazy doctor's get-out clause. He started out as a psychiatrist - when people didn't respond to anti depressants they tried B12! Because low levels were known to cause depression. If that didn't work, they gave thyroid hormone - T3. And these interventions often worked!

Now, they don't even bother testing for nutrient levels before putting people on psychotropic drugs that don't even work half the time, and have bad side effects. Crazy. Well, not really when you factor in Big Pharma pushing their pills so hard.

He started digging deeper into hormonal problems when he realised that some of his female patients were suffering horribly, unable to benefit from therapy, destroying their lives and relationships... Were they crazy? No. Just hormonally unbalanced.

It's so easy for doctors to dismiss things they don't understand, or have the time or the inclination to learn more about. If it turns out that my problem for this hellish 9 years has been my undertreateded thyroid and ignored lack of testosterone and DHEA, it's totally inexcusable. Not that the mainstream doctors give a f***.

I've suffered, my children and husband have suffered. I lost my 30's.

I just hope against hope that this restores me to even 30% above what I am now.

 

[SuzieSam]

@Cohen2 its really shitty - but it's YOUR health. Go see your 16th GP and tell him you're worried and need a second opinion about this thing. The doctors don't care.

I waited 3 effing years to go see this doctor I saw yesterday. What an idiot I was! Yeah, I had to pay for a private appointment, but I knew it was what I needed. Why did I wait? Fear of my husband being a jerks about the money, I guess.

Go!

 

[Cohen2]

@Cohen2 its really shitty - but it's YOUR health. Go see your 16th GP and tell him you're worried and need a second opinion about this thing. The doctors don't care.

I waited 3 effing years to go see this doctor I saw yesterday. What an idiot I was! Yeah, I had to pay for a private appointment, but I knew it was what I needed. Why did I wait? Fear of my husband being a jerks about the money, I guess.

Go!

Yeah I'm thinking about switching. Although my current GP is onto it enough to realise that there's something wrong with my health and has referred me to a neurologist and immunologist in the past. I didn't get accepted to the immunologist. Ive now convinced her to refer me to a rheumatologist. So although she doesn't know anything about ME she has her good points.

I am glad that youve found a doctor who can recognise and treat your illness. Must be an amazing feeling to finally have that.

 

[rosamary]

I can hardly believe that yesterday I spent nearly 2 hours (!) with a doctor and didn't get that frustrating cognitive dissonance between the sensible, progressive medical wisdom I've read on-line, and my real-world experiences.

I knew from personal recommendations that he would address my thyroid, adrenal, estrogen, progesterone and B12 problems in-line with my reading and long held desires. But - wow! Seeing a doctor who takes this in stride, doesn't act like I'm crazy, actually sees this every day...

I asked him about conversion disorder, and he said it's nonsense - an ego-centric, lazy doctor's get-out clause. He started out as a psychiatrist - when people didn't respond to anti depressants they tried B12! Because low levels were known to cause depression. If that didn't work, they gave thyroid hormone - T3. And these interventions often worked!

Now, they don't even bother testing for nutrient levels before putting people on psychotropic drugs that don't even work half the time, and have bad side effects. Crazy. Well, not really when you factor in Big Pharma pushing their pills so hard.

He started digging deeper into hormonal problems when he realised that some of his female patients were suffering horribly, unable to benefit from therapy, destroying their lives and relationships... Were they crazy? No. Just hormonally unbalanced.

It's so easy for doctors to dismiss things they don't understand, or have the time or the inclination to learn more about. If it turns out that my problem for this hellish 9 years has been my undertreateded thyroid and ignored lack of testosterone and DHEA, it's totally inexcusable. Not that the mainstream doctors give a f***.

I've suffered, my children and husband have suffered. I lost my 30's.

I just hope against hope that this restores me to even 30% above what I am now.

I have always found it amazing that many people in the medical profession don't reflect more on the fact that more females suffer from autoimmune diseases than males.

To me, it seems obvious that female sex hormones have something to do with that.

So HOW do those hormones affect the immune system?

 

[JaimeS]

I vote my GP and gynaecologist as the worst doctors. My testosterone and DHEA blood tests came back as zero a few years ago. Neither of them thought it worth mentioning to me, or doing anything about.

In my experience, there are physicians who, if they don't understand a test well, presume that it's unimportant. I sh!t you not. The arrogance is breathtaking: I don't recognize it, and I'm definitely aware of everything I need to know to do my job...

When I first started experiencing gut symptoms -- loonnng ago, way before signs of ME/CFS, but likely the infection that kicked off this whole business -- someone did a measure of IgA. IgA is the immunoglobulin especially responsible for protecting the mucosa, i.e. the gut. Ages later, when they were testing me for everything (twice!) they found that the IgA was quite low. Totally by chance, and because I keep everything, I noticed that they'd tested me for IgA levels years ago, when I had that first infection. It was also quite low.

My current immunologist suggested being on low-dose antibiotics "forever" based off of these levels. (I declined, but to give you all a general idea of 'low IgA can be a serious matter', especially when it comes to someone with marked gut symptoms.)

I'd been informed that all of the lab values that had come back were normal.

You know why?

Because there was no range listed next to IgA. Therefore, there was no red flag.

Likely someone ordered that panel out of a textbook, and had no idea what any of it meant.

It's great to know how long I was in such good hands as my original GP....

 

[SuzieSam]

To me, it seems obvious that female sex hormones have something to do with that.

So HOW do those hormones affect the immune system?

Rheumatologists are certainly aware of the female bias of auto immune disease, but I've not come across much research into it. Or about the majority of migraine sufferers being women, either.

Would there be more noise if the slant were towards men? Um...

I can tell you that my hormones precipitated my autoimmune disease, Hashimoto's Thyroiditis, as it started probably during pregnancy. Didn't know till after why I was so uncharacteristically skinny because of course the doctor didn't test me for it, (grossly negligent - I so love doctors!).

Autoimmune disease often erupt at this time for women - the fluctuating hormones can set off things like Rheumatoid Arthritis and Lupus for the first time, and conversely put them into remission for established sufferers.

Yep, HUGE connection to our delightful hormones!