My worst doctor story...

[taniaaust1]

The next time I phoned 999 (the UK emergency number) without calling the GP. This time I got to hospital and the real cause was eventually identified, but not before an A&E doctor rejected my suggestion that it was hyponatraemia and sent me home again, only for me to become acutely ill again on the way home and having to be rushed back.

I hope you got rid of that doctor. Your experience reminds me of the last time I was in hospital about a month ago now. After giving me 1 bag of saline the dr tried to kick me out and wouldnt believe I was still very ill. I ended up collapsed on the hospital floor before I even got out of the ward (only then to have him telling me to get up as I was fine (I think he made some threats too about calling security on me). Fortunately a nurse rechecked my BP when I was able to stand again, only to find when I did, it shot up to almost 200. I got my second bag of IV saline at that point which brought my BP back down very nicely (and would of helped my tachycardia too).

 

[MeSci]

I hope you got rid of that doctor. Your experience reminds me of the last time I was in hospital about a month ago now. After giving me 1 bag of saline the dr tried to kick me out and wouldnt believe I was still very ill. I ended up collapsed on the hospital floor before I even got out of the ward (only then to have him telling me to get up as I was fine (I think he made some threats too about calling security on me). Fortunately a nurse rechecked my BP when I was able to stand again, only to find when I did, it shot up to almost 200. I got my second bag of IV saline at that point which brought my BP back down very nicely (and would of helped my tachycardia too).

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Yes, I did change doctors, but went from the frying pan into the fire, as the new doctor stopped my desmopressin prescription without warning, discussion or explanation. I went to collect it from the pharmacy and it just wasn't there. When I phoned her to find out why, she was aggressive and said she wasn't prepared to prescribe it 'willy nilly' and that there was nothing in my records to say why I was on it. When I finally got a copy of my records I found that it had in fact been approved by two different consultants (Professor Pinching and a urologist) and an endo registrar.

That's when I was driven to seek other ways of getting medications I needed, very reluctantly and nervously. I had no choice - I desperately need desmopressin. Without it my life is almost unbearable - I have an almost-constantly full bladder, can't socialise, can't travel for more than half an hour, can't sleep, am permanently dehydrated and can't concentrate so that I get clumsy, knocking things over, falling over, and am in danger crossing the road because I have such a full bladder.

The docs (including in hospital) simply refused to believe that I wasn't drinking too much fluid or using too much desmopressin. One actually accused me on the phone of doing this.

That's when I was driven to change to another practice which is even further away and I can't get there without a lift or bus journey. At least the GP there listens to me a little, and I can manage the journey thanks to the desmopressin, some of which now comes from the NHS again but I daren't ask them to increase it to 300 mcg a day (which I need) in case they review it and stop it altogether. So I get the rest elsewhere.

But after all that, I avoid doctors as much as possible, and have instructed my friends not to take me to hospital again. I know how to treat my hyponatraemia. The hospital doctors don't. I didn't get ANY saline because they decided, in the absence of objective evidence but based purely on presumptions, that I was OVERhydrated and put me on fluid restriction. I came out in a state of severe constipation as a result, which caused horrible hallucinations. More

 

[taniaaust1]

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Yes, I did change doctors, but went from the frying pan into the fire, as the new doctor stopped my desmopressin prescription without warning, discussion or explanation. I went to collect it from the pharmacy and it just wasn't there. When I phoned her to find out why, she was aggressive and said she wasn't prepared to prescribe it 'willy nilly' and that there was nothing in my records to say why I was on it. When I finally got a copy of my records I found that it had in fact been approved by two different consultants (Professor Pinching and a urologist) and an endo registrar.

That's when I was driven to seek other ways of getting medications I needed, very reluctantly and nervously. I had no choice - I desperately need desmopressin. Without it my life is almost unbearable - I have an almost-constantly full bladder, can't socialise, can't travel for more than half an hour, can't sleep, am permanently dehydrated and can't concentrate so that I get clumsy, knocking things over, falling over, and am in danger crossing the road because I have such a full bladder.

The docs (including in hospital) simply refused to believe that I wasn't drinking too much fluid or using too much desmopressin. One actually accused me on the phone of doing this.

That's when I was driven to change to another practice which is even further away and I can't get there without a lift or bus journey. At least the GP there listens to me a little, and I can manage the journey thanks to the desmopressin, some of which now comes from the NHS again but I daren't ask them to increase it to 300 mcg a day (which I need) in case they review it and stop it altogether. So I get the rest elsewhere.

But after all that, I avoid doctors as much as possible, and have instructed my friends not to take me to hospital again. I know how to treat my hyponatraemia. The hospital doctors don't. I didn't get ANY saline because they decided, in the absence of objective evidence but based purely on presumptions, that I was OVERhydrated and put me on fluid restriction. I came out in a state of severe constipation as a result, which caused horrible hallucinations. More

Yeah, I get you with all that I think. I think I probably could do with some desmopressin to. Right now I have terrible thirst and know Im dehydrated thing is for me to stay well hydrated means Im drinking all the time and then I just pee all the time and get the symptoms you mentioned. (thirst has just got too much for me so Im going to grab anohter bottle of soda water).

Someone could easily write a book titled" ME/CFS Horror Stories, the problems with the medical profession we face".

 

[Sidereal]

The docs (including in hospital) simply refused to believe that I wasn't drinking too much fluid or using too much desmopressin. One actually accused me on the phone of doing this.

That's when I was driven to change to another practice which is even further away and I can't get there without a lift or bus journey. At least the GP there listens to me a little, and I can manage the journey thanks to the desmopressin, some of which now comes from the NHS again but I daren't ask them to increase it to 300 mcg a day (which I need) in case they review it and stop it altogether. So I get the rest elsewhere.

What an ordeal! I don't know what it is about MDs and diabetes insipidus (especially if it's partial) but they simply refuse to accept that a patient has this condition unless it's in its most florid life-threatening form. It's in every frigging textbook of endocrinology.

 

[MeSci]

What an ordeal! I don't know what it is about MDs and diabetes insipidus (especially if it's partial) but they simply refuse to accept that a patient has this condition unless it's in its most florid life-threatening form. It's in every frigging textbook of endocrinology.

My endo - one of the 'top' endos who appears in the media - said that it couldn't be partial and you couldn't have it unless you were born with it. He and his registrar ignored the referenced summary that I gave them that proved him wrong.

 

[Sidereal]

My endo - one of the 'top' endos who appears in the media - said that it couldn't be partial and you couldn't have it unless you were born with it. He and his registrar ignored the referenced summary that I gave them that proved him wrong.

"unless you were born with it" - haha, what an idiot. Reminds me of the time I went to see the head of the endocrinology department at the "top" university hospital in my (European) country. I had elevated serum calcium. Many cases of hyperparathyroidism are misdiagnosed as ME/CFS/FM due to the large symptom overlap. He refused to order a PTH level because "nah, it's so rare". I saw a total of four endos in the 20 years of this illness. All of them were abusive, arrogant and quite stupid.

I've concluded that the only conditions endocrinologists seem to be able to tolerate are diabetes (mellitus) and hypo/hyperthyroidism. Everything else freaks them out.

 

[PennyIA]

"nah, it's so rare"

I have such a huge pet-peeve about this type of statement (that I've heard so often).

I do get the theory that when you hear hoofbeats that you should look for horses before you look for zebras. BUT.

THEY SEEM TO FORGET THAT AFTER THEY HAVE RULED OUT HORSES, THEY NEED TO START LOOKING FOR ZEBRAS.

Geez, I can't tell you how many conditions that are 'rare' are partly rare because the doctors never think to diagnose them and folks go under diagnosed and under treated.

//sorry for the yelling but it truly does tick me off. I have protein c deficiency. It's rare, but not unbelievably rare. Babies born homozygous with protein C deficiency rarely live past two weeks unless they get diagnosed with it right away and treated with protein c iv's for the rest of their lives. It's rare. But that doesn't mean it doesn't happen. So guess what? MY new grandbaby hasn't been tested because it's so rare. So I've been eagle-eying him since birth (he's 9 days old), so far so good. But the SECOND I see an unexplained bump or symptoms of distress he's going straight to the ER. Because I am not going to let an undiagnosed zebra take him.

 

[MeSci]

Geez, I can't tell you how many conditions that are 'rare' are partly rare because the doctors never think to diagnose them and folks go under diagnosed and under treated.

So true.

 

[DanME]

Wow, I am really baffled by all your terrible experiences with the doctors and physicians. Some are so bad and abusive, they really dwarf my own personal stories.

I often think, at least I am able to defend myself quite properly, because of my huge medical knowledge. But it makes me even more angry. To the one doctor, who told me, there are no drugs against OI and POTS, I recommend a quick search on pubmed and promised him to find over 1000 studies on the topic. But he just weirdly smiled at me. Why so much arrogance? Why so little empathy? I can explain a lot rationally, (medical training, the system, the docter as the god in white etc.), but emotionally I am always stunned by it.

 

[Soundthealarm21]

Oh, I didn´t know this, I am sorry for you, Daniel. It´s like a big mockery. And what the heck would a life crisis (I do NOT agree with her, just sayin´) have to do with POTS??? I am a psychologist, and I never heard that before. She is not a psychologist. Why is it so hard for people to say: I do not know what´s wrong because your test results are good, but I still believe you that there is something (physically) wrong?

This!!!

 

[Little Bluestem]

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You forgot the .

 

[MeSci]

You forgot the .

I won't use the emoticon without clarification because it is defined here as 'mad' instead of 'angry'. The literal definition of 'mad' is 'insane'. We have enough problems with a group of psychoquacks thinking that we are unhinged without saying it ourselves.

Some may think this pedantic, but I am borderline Asperger's and a stickler for accuracy.

 

[Little Bluestem]

For the record, when I use the emoticon, I mean angry, not insane.

 

[Valentijn]

I won't use the emoticon without clarification because it is defined here as 'mad' instead of 'angry'. The literal definition of 'mad' is 'insane'. We have enough problems with a group of psychoquacks thinking that we are unhinged without saying it ourselves.

Some may think this pedantic, but I am borderline Asperger's and a stickler for accuracy.

In the US, "mad" almost always means angry, and would only be used in very rare circumstances to mean insane. Mostly with established phrases like "mad scientist", etc.

So I'm guessing he's an American emoticon, not a British one

 

[MeSci]

For the record, when I use the emoticon, I mean angry, not insane.

Yes - I expect people do, especially as there is a predominance of Americans on here. But if the word 'angry' were shown instead of 'mad', it would be clear to people of all nationalities who understood English, including people on the autistic spectrum. It would be more inclusive.

 

[misskatniss]

Wow, I am really baffled by all your terrible experiences with the doctors and physicians. Some are so bad and abusive, they really dwarf my own personal stories.

I often think, at least I am able to defend myself quite properly, because of my huge medical knowledge. But it makes me even more angry. To the one doctor, who told me, there are no drugs against OI and POTS, I recommend a quick search on pubmed and promised him to find over 1000 studies on the topic. But he just weirdly smiled at me. Why so much arrogance? Why so little empathy? I can explain a lot rationally, (medical training, the system, the docter as the god in white etc.), but emotionally I am always stunned by it.

WTF? Even my humble person after a quick online research got info about medication against POTS/OI. And I am not a doctor, yet the persons who prescribe that stuff ARE. Yeah, I know that kind of smile the docs give you. I wished, and that is not politically correct, as you shall not wish harm to anybody - but I wished sometimes that for each of that idiot smiles they give you they shall pass one day in the "M.E. Inn", which is, their bedroom, in pain and with all the stuff we all deal with daily. And no, I would not give them any weird smile then. I think that experience would just be enough to open their eyes.

 

[DanME]

WTF? Even my humble person after a quick online research got info about medication against POTS/OI. And I am not a doctor, yet the persons who prescribe that stuff ARE. Yeah, I know that kind of smile the docs give you. I wished, and that is not politically correct, as you shall not wish harm to anybody - but I wished sometimes that for each of that idiot smiles they give you they shall pass one day in the "M.E. Inn", which is, their bedroom, in pain and with all the stuff we all deal with daily. And no, I would not give them any weird smile then. I think that experience would just be enough to open their eyes.

I know. A quick google search would be enough to find the necessary information about OI, POTS and the relating drugs and treatment tips. You don't need to search for scientific papers. But if you do, you ll find a lot of credible studies from credible universites. There isn't even a lot of controversy anymore, if OI symptoms are maybe psychosomatic. The common consens is, they are not. But all this doesn't really matter. I realized, that most doctors stick to their field, their personal expertise and to their traditional approaches, even at a university hospital. Cardiology is mainly about the heart and the vascular and autonomic system only play a secondary role.

 

[MeSci]

Yeah, I know that kind of smile the docs give you. I wished, and that is not politically correct, as you shall not wish harm to anybody - but I wished sometimes that for each of that idiot smiles they give you they shall pass one day in the "M.E. Inn", which is, their bedroom, in pain and with all the stuff we all deal with daily. And no, I would not give them any weird smile then. I think that experience would just be enough to open their eyes.

I've not only had the 'smile' (which makes me feel like exploding in rage - I do NOT like to be patronised by someone with lower qualifications and less knowledge about medical science than I have) but also a weird look which I couldn't interpret at all. It came after I told a hospital endo registrar what an appalling effect my polyuria had on my life, after she had dismissed all the info I had provided. Maybe it was meant to be sympathy. But I do not expect doctors to communicate by making faces.

I walked out. I had made a long journey to the hospital and used up (wasted) a lot of time and energy to see this woman.

 

[jimells]

Wow, I am really baffled by all your terrible experiences with the doctors and physicians. Some are so bad and abusive, they really dwarf my own personal stories..

I know what you mean. I almost feel grateful that I have (so far) only experienced emotional abuse and neglect by the medical treatment industry.

And I mean industry, as we are just a slab of meat being shoved down the dis-assembly line to the next work station. Every clinic I've been to is the same. First stop is the reception window, then the waiting room. Next stop is the scales, then the chair to take blood pressure. Then more waiting in an uncomfortable exam room. After five minutes with the doc, the last stop is the billing clerk. At each station on the dis-assembly line there's a different person, probably different for each visit. There's no personal interaction at any step of the line. I get more personal interaction at the meat counter at the grocery.

The most bizarre interaction I've had so far happened at a neuro's office. He spent maybe a half-hour trying to bully me to have a prostate biopsy, having diagnosed me to have high-PSA "disease". He wasn't much interested in my frequent migraines or any of the other numerous neurological symptoms. I did have a test that showed high PSA, a test I did not ask for, and it was ordered without my knowledge, in violation of guidelines. This was years ago, and I still have no symptoms of "plumbing problems". In fact it's about the only part of my anatomy that still works, and I'd just as soon keep it that way!

The most common refrain I hear is, "We can't help you, and we don't know who can." Left unsaid is, they can't be bothered to find someone who can help, but they will still get paid for the appointment.

 

[MeSci]

I did have a test that showed high PSA, a test I did not ask for, and it was ordered without my knowledge, in violation of guidelines.

I had a really weird one a few years ago - I saw on my medical records that my blood had been tested for illegal drugs!

I contacted the GP's surgery (that's what we call their 'office', Americans) and was reassured that it was a mistake. I pressed them quite a lot on this and the GP did appear to investigate it in depth. I also did some searches on the plausibility of the explanation and tend to believe the 'mistake' explanation, but at the time it was a shock. I could think of no reason why such a test would have been done and was worried that they were trying to 'psych' me because I had been complaining, disputing diagnoses, etc.