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Consultants and doctors

Metal_Maiden

I have a condition called postural orthostatic tachycardia syndrome. However most doctors here have never heard of it and some others use different terms, so I end up using vague terms like 'autonomic dysfunction' or 'orthostatic problems'. Basically it means whenever I'm standing my heart goes extremely fast, and I can faint. When it gets bad, like now, I have daily low fevers, and spend most of my time sweating and/or vomiting with chest pains, agitation and all sorts of horribleness. I was admitted to hospital a few days ago basically to recuperate a bit cos I couldn't stand at all, but then my doctor, who treated the condition when he was abroad, went away and I had to see a different guy.

Well. The thing with autonomic dysfunction is that none of the drugs currently work very well, and I haven't had any luck with them. There's basically nothing doctors can do for it sometimes, except physio or weekly IV saline infusions, neither of which are done in this country. So it's a chronic debilitating condition (or 'nuisance' as some docs say) that doctors can't do anything about, and they absolutely love those. So naturally docs who don't know much about it have to imply you're psychologically ill, because otherwise you should be able to handle it according to them. Like the guy today: 'you can have a pain in your leg, but some people perceive it worse than others'. I reminded him that he really has no idea what my condition feels like. I told him that before I was diagnosed I was on benzodiazepines (xanax, valium) for months, and while they made very calm and positive, they did nothing to help me stand. When I would take issue with something, he would ask his underlings 'is that what I said?' and they had to go 'No, no!' instantly. He demonstrated complete ignorance about my condition (saying for example that exercise didn't help it, which is the opposite of true according to all research ever), and instead of admitting it, he got sarcastic when I had to correct him. He walked away from my bed and down the hall going 'Wow. Wow.' In short, he was a ****, and I was feeling way too sick to put up with it. For the temperatures, he called them 'weird' and gave me a prescription for paracetamol (which I was already taking).

This is far from the first experience of this sort I have had, nor the worst, and I know others with any kind of chronic condition experience the same. My mom even had very rude, dismissive treatment from some when she had serious cancer. Why do they have to be like this? Some of them can manage to say 'I can't help much but I understand this is very difficult' but many can't. They feel that people should be able to ignore anything they can't treat. They act as if, if they can't treat it, it must be trivial or your fault somehow. They feel they have the authority to concoct all kinds of weird theories about your life, and you leave feeling utterly degraded sometimes. The lack of resources atm has made treatment of non-fatal conditions practically evaporate I know, but there's more to it than that. There is something truly wrong in the medical culture here.

(Btw, if anyone reading this has POTS and feel you could use some help, please message me as I'd like to see about setting up a support group in Ireland. Even if you're doing okay, I'd like to get an idea about numbers.)

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Artful_Badger

Its all in your head OP. Have you tried cracking open your head and looking for it ?

_Whimsical_

Hey OP . https://www.facebook.com/IrishDysautonomiaAwareness?fref=ts is a fb for dysautonomia awareness/sufferers in Ireland. You'd get a good idea of numbers there.

So sorry to hear you're going through this. I will PM you later once I get a chance. Also I couldn't agree more with you.

davo10

Metal_Maiden wrote: »

I didn't expect some consultant I'd never seen before in my life to come along and suggest that the problem with my 160 standing heart rate, temperatures and collapses was that I should be ignoring them and should see a psychiatrist.

According to google, these are all symptoms of acute anxiety disorder, now who would a consultant recommend you see to rule that condition out, hmmmm let me see, a psychiatrist perhaps?

http://m.helpguide.org/articles/anxiety/anxiety-types-symptoms

Pumpkinseeds

Patients with relatively uncommon chronic disease often have to do a lot of research on their own illness. Just because an illness falls under a particular consultants deemed area of expertise doesn't mean that the consultant will be an expert in it.

I have one of those diseases and over the years I've chatted with people all over the world with the same illness who have had to research it for the same reasons as I have, namely that our consultants have either never heard of it or have never actually seen a case of it, let alone a case that is in the most severe stage of the disease as ours is.

I've met some excellent consultants and then again I've had some absolutely horrific experiences with other consultants. I've had some consultants tell me that I know more about the disease than they do. If I hadn't done the research I've done I'd have been fobbed off years ago and left without treatment, as it is I'm on a waiting list to try the last treatment option on a very short list of treatment options open to me.

SpaceTime

I've experienced both extremes when it comes to consultants.

I went to an ENT surgeon a good few years ago (won't say where or when as I am not identifying him or her).
He or she was perfectly good at his job in terms of the technical expertise and did a good repair job on my ear which has worked out well but he was incredibly rude.

I'm quite technically savvy and I understand medical terminology and on a few occasions when I asked him or her what he was doing before he went ahead with something, he or she quite literally started humming and flatly ignored me.

He or she also cleaned debris from my ear canal which was actually really painful and I literally hardly bear it and they just got really ratty with me and made all sorts of sarcastic comments.

...

Then I had a situation where I went to a GP after having all this ear surgery (and I knew exactly what had been done and the precautions required afterwards) and she was insisting that she should syringe my ear which was 100% totally contraindicated - she then concluded that my mastoid bone was sore because she was pressing a scar REALLY hard with her fingers. When I explained about the syringing being a total no no, she got really condescending with me and told me that I shouldn't be reading so much on the internet. She also relayed to my parents (I was a teen at this stage) that I was a 'cheeky pup'.

On another occasion, I went to the same GP because my face was twitchy and I had a metallic taste in my mouth (both symptoms of facial nerve issues and this occurred right after surgery near my facial nerve) and she told me that I was suffering from pre-leaving cert stress and offered to prescribe meds! I changed GP immediately.

...

On the other side of it, my current ENT guy is one of the nicest guys you could meet. Great at what he does, very friendly, treats you like a person.

My current GP's also really personable and quite willing to discuss anything from a completely technical point of view and also quite willing to admit the limits of his own knowledge and go look stuff up / find out things.

I don't expect a doctor to know absolutely everything, I expect them to be able to find out though. That's why arrogance worries me. I'm a lot happier when I know someone's able to recognise when they don't know something and are willing to find out more.

Like any area of life, you get people who are good and bad at what they do for various reasons.

I'd always suggest with GPs anyway, shopping around! If you don't like your GP, change.

ABC101

Pumpkinseeds wrote: »

Patients with relatively uncommon chronic disease often have to do a lot of research on their own illness. Just because an illness falls under a particular consultants deemed area of expertise doesn't mean that the consultant will be an expert in it.

I have one of those diseases and over the years I've chatted with people all over the world with the same illness who have had to research it for the same reasons as I have, namely that our consultants have either never heard of it or have never actually seen a case of it, let alone a case that is in the most severe stage of the disease as ours is.

I've met some excellent consultants and then again I've had some absolutely horrific experiences with other consultants. I've had some consultants tell me that I know more about the disease than they do. If I hadn't done the research I've done I'd have been fobbed off years ago and left without treatment, as it is I'm on a waiting list to try the last treatment option on a very short list of treatment options open to me.

And well done to you Pumkinseeds... that's pretty much sums it up.... one has to fight your own corner... do as much research as you can... sorting out the wheat from the chaff etc.. attempting to understand and eventually master the problem.

_Whimsical_

davo10 wrote: »

According to google, these are all symptoms of acute anxiety disorder, now who would a consultant recommend you see to rule that condition out, hmmmm let me see, a psychiatrist perhaps?

http://m.helpguide.org/articles/anxiety/anxiety-types-symptoms

The symptoms of a heart attack are quite similar to the symptoms of anxiety. So too can the symptoms of pretty much every illness be mimicked by severe anxiety. However if you had researched the OPs problem you'd realise her symptoms are posturally mediated and occur every time she stands up,possibly even sits up. They are objective findings,while the cause,treatment and prognosis are unsure the actual phenomonen that is POTS is clinically distinct from anxiety and has a recognised testing procedure for conclusive diagnosis.

davo10

_Whimsical_ wrote: »

The symptoms of a heart attack are quite similar to the symptoms of anxiety. So too can the symptoms of pretty much every illness be mimicked by severe anxiety. However if you had researched the OPs problem you'd realise her symptoms are posturally mediated and occur every time she stands up,possibly even sits up. They are objective findings,while the cause,treatment and prognosis are unsure the actual phenomonen that is POTS is clinically distinct from anxiety and has a recognised testing procedure for conclusive diagnosis.

I wasn't trying to diagnose her problem, I'm not a Doctor but I wouldn't criticise a Doctor for advising her to see a psychiatrist to rule out another cause of the symptoms. Did the OP diagnose herself?

Also by the way, a heart attack causes damage to the cardiac muscle cells, the by products can be picked up easily in a blood test so it's not the same signs and symptoms.

_Whimsical_

davo10 wrote: »

I wasn't trying to diagnose her problem, I'm not a Doctor but I wouldn't criticise a Doctor for advising her to see a psychiatrist to rule out another cause of the symptoms. Did the OP diagnose herself?

Also by the way, a heart attack causes damage to the cardiac muscle cells, the by products can be picked up easily in a blood test so it's not the same signs and symptoms.

You were saying that the OPs symptoms were identical to those of anxiety. I was just saying that the symptoms of many illness are easily mistaken for those of anxiety at a casual glance. I guess we agree on that.:)

POTS is diagnosed by a tilt table test usually performed by a cardiologist in a hospital setting. I'm sure that the OP has had this done to receive a positive diagnosis. However even after that and despite copious research on the subject in medical journals many doctors confronted with it for the first time respond with the catch all response for things they don't understand "I don't know what is going on so you must be the problem". It's unfortunate but it's true. Most people with rare or little known diseases experience it as some point.

davo10

_Whimsical_ wrote: »

You were saying that the OPs symptoms were identical to those of anxiety. I was just saying that the symptoms of many illness are easily mistaken for those of anxiety at a casual glance. I guess we agree on that.:)

Exactly, very often a diagnosis is arrived at by a process of discovery and elimination. The OP took offence at being told she should consult another specialist for an opinion to rule out psychiatric problems because Google told her she had POTS, go figure.

Lucas Castroman

JuliusCaesar wrote: »

I didn't say I was an expert on my condition, although I had read up the peer-reviewed papers on it - I was an expert on a related condition which is in my field. There is an overlap between medicine and psychophysiology (a field within psychology) you may be surprised to hear.

Oh dear, now I fully understand. You were boring him with your psycho-babble and he cut you off at the knees and quite rightly so. These are busy people and don't have time for waffle.

_Whimsical_

davo10 wrote: »

Exactly, very often a diagnosis is arrived at by a process of discovery and elimination. The OP took offence at being told she should consult another specialist for an opinion to rule out psychiatric problems because Google told her she had POTS, go figure.

She never said Google told her that she had it.

davo10

_Whimsical_ wrote: »

She never said Google told her that she had it.

I'm sorry, my mistake, I don't know if it was a Doctor, consultant or google who diagnosed OPs condition.

steddyeddy

Adamantium wrote: »

The best doctors are scientists and oddly enough when you're dealing with something as existence ending as cancer or plethora other problems, there bedside manners while comforting won't get cut out the cancer. You can't "feel" aka "pray" it away.

"Your feelings while important, are also entirely irrelvant to what I have to do"

Note: I've been down this road from personal experience.

It's about right action, right solution.

Well scientists are often doctors (ie have doctorates) but they would not necessarily make the best clinicians (how scientists refer to medical doctors). I think the difference between scientists and clinicians is that scientists follow this mantra:

“Science is the belief in the ignorance of experts,” Richard Feynman winner of the Nobel prize for his work on quantum electordynamics

Always question the experts. Always research yourself and never let anyone tell you otherwise.

Some scientists I know who work on certain diseases told me that the victims of that disease are some of the best experts.

Adamantium

steddyeddy wrote: »

Some scientists I know who work on certain diseases told me that the victims of that disease are some of the best experts.

Psychologists and Psychiatrists account for larger proportions of people who suffer from this phenomemon.

TeddyTedson

Basically I was referred to a consultant about 3 or 4 years ago and have been paying privately. This costs me €120 now for a 15 minute consultation! And that would be the max time I've ever seen him. I'd see him maybe 4 times a year but basically I think he's hopeless. Sometimes he's not listening to me and has asked such ridiculous questions that I can't gauge for him although that's what he takes down in his notes. It's not for anything mental and I've often thought that he's trying to keep me going as long as possible.
Can my GP only refer me to this particular consultant or what's the story with it?

Sir Arthur Daley

As price comparison same as my favourite club.

TeddyTedson

WikiHow wrote: »

As price comparison same as my favourite club.

huh?

Sir Arthur Daley

TeddyTedson wrote: »

huh?

I can cut €100 for 15 mins on a Friday night plus one glass of Champagne.

TeddyTedson

WikiHow wrote: »

I can cut €100 for 15 mins on a Friday night plus one glass of Champagne.

Oh you're a wrong un!

Sir Arthur Daley

TeddyTedson wrote: »

Oh you're a wrong un!

Not too many panes of glass left in your glass house?

Acedia.

You can research consultants yourself and ask your GP to refer you to whichever one you choose. That's what I do and my GP always facilitates me.

€120 for 15 minutes sounds fairly standard though.

kneemos

If you're paying cash you can take your pick I would have thought.Dunno if your GP or consultant does the referring

Sir Arthur Daley

What are you paying the consutlant for Ted? is it should i watch Fair City or Eastenders or should i wear make up or not? You need to provide us with more clear concise factual non imaginational information.

MadsL

WikiHow wrote: »

What are you paying the consutlant for Ted? is it should i watch Fair City or Eastenders or should i wear make up or not? You need to provide us with more clear concise factual non imaginational information.

Working on his AH addiction I expect...

mfergus

Acedia. wrote: »

You can research consultants yourself and ask your GP to refer you to whichever one you choose. That's what I do and my GP always facilitates me.

€120 for 15 minutes sounds fairly standard though.

How many consultants have you been to?

TeddyTedson

mfergus wrote: »

How many consultants have you been to?

Just one. My GP is excellent so I'm surprised about how useless this consultant is.
My main issue with him is what he's prescribing me. Basically he took me off medication which I found excellent and put me on another brand of a previous medication we'd agreed wasn't working.
It's annoying that I've been seeing him since 2009 now and spent a fortune but to be honest I don't think he has a clue what to do anymore from things he says. It's driving me mad to be honest.

WilyCoyote

Went to a consultant in a South Dublin seaside village (nudge nudge, wink wink) about 20 years ago for a shoulder injury. I think it was IP 40 for about 20 mins. He would operate ....... (I was paying cash) and the cost would be IP 3,700 excluding physio/physical therapy.
After I consulted another one (same price, different venue) he told me that the procedure was never 100% successful. On further questioning he said that 50:50 was about the result. Some days later I met a vet and greyhound owner in a pub in Tipperary. A good few pints later I was assured that this would right itself 100% in 18 months with some exercise. I followed his advice and, as a plasterer, I was once again working on piece work within that time.
Moral of the story? You tell me .......

TeddyTedson

WilyCoyote wrote: »

Went to a consultant in a South Dublin seaside village (nudge nudge, wink wink) about 20 years ago for a shoulder injury. I think it was IP 40 for about 20 mins. He would operate ....... (I was paying cash) and the cost would be IP 3,700 excluding physio/physical therapy.
After I consulted another one (same price, different venue) he told me that the procedure was never 100% successful. On further questioning he said that 50:50 was about the result. Some days later I met a vet and greyhound owner in a pub in Tipperary. A good few pints later I was assured that this would right itself 100% in 18 months with some exercise. I followed his advice and, as a plasterer, I was once again working on piece work within that time.
Moral of the story? You tell me .......

Go to the vet instead..?

WilyCoyote

No Ted, I didn't mean that. What I am saying is that other avenues are available ......... at least with my problem. But I could have shelled out for a complete fuck up as I've heard since of people coming out the worse side in these simple operations and not having the finances to sue.
The first guy never said that things could go wrong. I was under the impression that I pay my money and 12 weeks later would be flying at work.