Frustrating doctors appointments

[Pino]

This is not directly related to my incontinence issues, but i think here are some people who can relate the most.

I went to a rheumatologist for checking on Sjögrens Syndrome, to find a reason for my excessive thirst most of the time.

We had a short talk, he checked on my joints, took a blood sample, or more like seven and x-rayed my feet. I thought that to be strange, because it felt more like checking for Rheumatoid Arthritis, he did not ask about my Fibromyalgia (in my records) at all. I explained again, that i am in front of him because of my dry eyes and mouth and the high relation between ME, Fibromyalgia, Polyneuropathy and Sjögrens. He just did his thing.

Now, some weeks later, i had the second appointment to discuss his findings.

He told me i have got severe "heel spurs" on both feet and gave me a prescription for some insoles. Last words were like: "You do not have Rheumatism, your blood work is perfect" and than he wanted me to go, the final writing will be send to my family doctors. I was really run over. At the front desk i asked for the blood work and checked at home. He did not look for Sjögrens AK, only ANA and Rheumatism AK connected to Arthritis, most is just basic stuff beside my GFR rate, which is low (78) by the way. Not even did he take my electrolytes, which are off most of the time.

Do doctors always act like this? Happens to me much to often, they do, what they always do, nothing else.

I did not went there for hurting feet. Damn, it is frustrating.
Same day i got a good advice (and explanation) for my problem and some kind of treatment as well, nothing expensive.
This will not solve the cause but help with the symptoms. The person has got same diagnosis as me and was able to reduce the fluid intake about 50%.
Drinking only 2,5 liters instead of 5 liters would reduce my bladder problems at lot.

 

[EcoIncon]

Sorry to hear about your experience @Pino. It's interesting that they don't offer a class on listening in medical school. I've run into so many doctors that simply think they are above listening to their patients... unfortunately, this seems more pronounced in male doctors... I can't believe that he wouldn't at least address your concern with you. Can you get a second opinion?

 

[Pino]

Sorry to hear about your experience @Pino. It's interesting that they don't offer a class on listening in medical school. I've run into so many doctors that simply think they are above listening to their patients... unfortunately, this seems more pronounced in male doctors... I can't believe that he wouldn't at least address your concern with you. Can you get a second opinion?

I could, perhaps, but i will not do it for some time. I do need a break from new doctors.

 

[mickdl]

Hi Pino,

Do doctors always act like this? Happens to me much to often, they do, what they always do, nothing else.

yes they do… At last from what I can say in Germany. Just a hint: Tell the doc exactly what you’re expecting and what you want him to do. I think you are meanwhile also pretty well educated to do so. The funny thing is - since I communicate in that way they are more serious and open because they understand that someone with a medical knowledge asking the questions.

If they do blood work and I want something specific I always ask for the specific test. Often they tell me it’s not covered by insurance but then I ask for a separate bill.

The same is for fancy testing. I always ask what diagnostic he expects to see, why he’s doing this test in this context and what a resulting therapy would be. If X-Ray’s are involved I always ask for options.

I know this especially from orthopaedics who try to generate some extra money from their lousy over-aged X-Ray equipment to the cost of my health…

But at last from my experience the good news is that things are manageable if you talk in the right way with them.

 

[CheshireCat]

Do doctors always act like this? Happens to me much to often, they do, what they always do, nothing else.

Most doctors do. The question is why?

You need a proper diagnostician, not just a doctor. Even within a specialty, most are not proper diagnosticians. Finding a proper diagnostician typically requires a recommendation from someone who has interacted with said doctor by a patient, not a referral from a doctor.

Doctors who are NOT diagnosticians do not like to be challenged by patients. They have a money earning schedule that requires dealing in the known. Unknowns lose money, as more time is required. I do not know how doctors are compensated for time or penalized for referrals in Germany, but if you follow the money you will have a better understanding of why doctors operate the way they do.

Doctors who are diagnosticians typically are associated with University or teaching hospitals. They are looking for the challenging patients for research or for student studies. Your unique cluster of symptoms/overlapping diagnoses provide a challenge to a diagnostician, because you do not follow Occam's Razor.

I have had times in my life where blood work came back with terrifying numbers indicating horrendous chronic disease, only to be completely normal a year later. Doctors who are NOT diagnosticians look back at those numbers and state that obviously the lab doing the testing was compromised. The only problem is, I have a long history of wild numbers interspersed with normal numbers. If labs are always this compromised, then what is the value of lab work? If the lab work is not compromised then what unknown disorder mimics the same numbers as autoimmune disorders, severe infection, chronic inflammation, etc. one day and are normal a short time later without intervention?

A doctor ignores you and does what they think is best in spite of what you present.
A diagnostician listens to you and knows when they hit a dead end and will tell you so and why.

 

[Eclectic]

And this is why so many people support a multi-billion dollar homeopathic/alternative medicine industry, especially here in the US. It may be placebo BS, but at least people feel like they are getting somewhere.

BTW, I always look for a female doctor because they usually have better bedside manners.

 

[mickdl]

I think CheShireCat's hint "follow the money" fits quite well. However, it is not always so easy. I can only say this again for Germany now, but I'll try to answer the question about the "why". First of all, there is a massive difference whether you are a private patient or a health insurance patient. Here are the tips for health insurance patients.

Theoretically, the health insurance companies pay approx. 15 minutes of doctor's talk. Practically, the doctor tries to get to 8-10 minutes so that it is somehow worthwhile for him. He bills quarterly and can only bill once a quarter for a consultation on the same problem.

For medicines and certain examinations, there is a budget that is available for all health insurance patients per quarter & practice. When the budget is used up, nothing can be prescribed with a few exceptions. What and how much is included in this budget depends, among other things, on the doctor's specialty, but also on certain contractual agreements.

The doctor can charge for certain examinations and treatments that are in the doctor's specialty if he carries them out himself. If it fits in any way, he will try that too. If you have concerns, you should reject. This applies in particular to additional services that are not paid by the health insurance.

Here are a few more recommendations:

1) Go into the appointment well prepared, have all the documents ready and think about exactly what you want to achieve and how. It's like a pitch - you have 5 minutes to get to the point.

2) Come with exactly _one_ thing that you want to have solved / treated / investigated. If you have more things, you'd better go twice.

3) Do not assume that the doctor looks at your documents before the appointment and knows them. He does that at most when you sit in front of him. If the file is thick, he only reads the conclusion - i.e. what happened in the last appointment.

4) If you want something more expensive that you know is budgeted, go to the doctor at the beginning of the quarter, because there is usually still money there.

5) If it doesn't work with one doctor, go to another. Whether it is good or bad does not matter in this case, because you only want the referral for the examination or the medication.

In addition, it should be noted:
Make copies of all doctor's letters, laboratory results, diagnoses, therapies, prescriptions, etc. This is what you need for your reasoning at the next appointment. In addition, this is important at the latest when it comes to the recognition of a disability - which can unfortunately happen more often in our context.

Regarding to ChesireCat idea I find the topic of diagnostics and universities difficult. In principle, it is already right that the specialized doctors sit in university hospitals. However, this does not mean that better diagnostics always take place there. A good specialist in general medicine who looks holistically at a problem sometimes helps more than a super expert who only sees his small specialty.

In the end, you often need both. But not only at the doctor but also at the clinic, you should choose wisely. A good way in Germany is to go through the respective professional societies. They usually have certification programs for clinics. I would always look there in advance and look for a certified clinic and would rather accept a longer way to travel. The certification usually includes that the clinics must prove certain numbers of cases. This is not the case with the maybe uncertified local university clinic. Therefore, the chance to get to a sorcerer's apprentice whose Prof. is not an expert in this position and only does that because it is part of the training is great...

 

[fredy552]

I have had several issues since I had COVID-19 in late 2020. My GP Doctor whom I have to start with because that is the INSURANCE way has blown my issues off for 3 years. Now I raised hell about it and I am going through testing for the issues to see if they can figure it out. One Is Incontinence two techs. doing the testing say there are a lot of people like me going through different testing and all are saying they have no idea why I am Incontinent. But still testing for other issues.

 

[CptKirk]

This is not directly related to my incontinence issues, but i think here are some people who can relate the most.

I went to a rheumatologist for checking on Sjögrens Syndrome, to find a reason for my excessive thirst most of the time.

We had a short talk, he checked on my joints, took a blood sample, or more like seven and x-rayed my feet. I thought that to be strange, because it felt more like checking for Rheumatoid Arthritis, he did not ask about my Fibromyalgia (in my records) at all. I explained again, that i am in front of him because of my dry eyes and mouth and the high relation between ME, Fibromyalgia, Polyneuropathy and Sjögrens. He just did his thing.

Now, some weeks later, i had the second appointment to discuss his findings.

He told me i have got severe "heel spurs" on both feet and gave me a prescription for some insoles. Last words were like: "You do not have Rheumatism, your blood work is perfect" and than he wanted me to go, the final writing will be send to my family doctors. I was really run over. At the front desk i asked for the blood work and checked at home. He did not look for Sjögrens AK, only ANA and Rheumatism AK connected to Arthritis, most is just basic stuff beside my GFR rate, which is low (78) by the way. Not even did he take my electrolytes, which are off most of the time.

Do doctors always act like this? Happens to me much to often, they do, what they always do, nothing else.

I did not went there for hurting feet. Damn, it is frustrating.
Same day i got a good advice (and explanation) for my problem and some kind of treatment as well, nothing expensive.
This will not solve the cause but help with the symptoms. The person has got same diagnosis as me and was able to reduce the fluid intake about 50%.
Drinking only 2,5 liters instead of 5 liters would reduce my bladder problems at lot.

I went through 4 Rheumy's before I found a good one, but I hit a home run with the one I found in either late 2004 or early 2005. I still see him today despite the one at my local VA being pretty damn good as well, but I am convinced that without the Rheumy that I drive 100 miles for (each way, 4x/yr) and my PCP that I'd either be in far worse condition than IU already am or possibly dead as I was that bad when these issues became chronic on Jan 18 2004. Never accept seeing a Dr. you don't trust with your life. It is a pain in the ass, but you can't settle, period!

If you're anywhere near NE Pa I have a couple of names I could give you.

CptKirk

 

[littleFeathers]

At the risk of going off-topic...

They have a money earning schedule that requires dealing in the known.

This, IMHO, is the problem with health care, at least in the US. Increasingly health care is being provided by big businesses; you can hardly find a doctor in a private practice any more. They all work for large hospitals or health care conglomerates.

Those big businesses are run by business people. The same sorts of people who optimize a fast food restaurant to serve x number of hamburgers per hour and apply the same methodology to health care. n doctors x y patients per hour = $. In most any other business this would be just fine, and maybe even Best Practice. But the "product" of health care isn't like manufacturing widgets. The consumer side is also not like any other business. I can pick and choose from dozens of breakfast cereals. I don't have that kind of choice in health care.

I've mentioned this theory to a few doctors and have generally been met with agreement, and the few complaints they shared with me sound like the same sorts of things a factory worker might complain about: hours, unexpected transfers, quotas....

I don't know what the answer is.

 

[dogboy]

My daughter-in-law has been going from one specialist to another for the last two years and they still haven't given her an exact diagnosis. It's all very frustrating.

 

[CptKirk]

@dogboy My Rheumatologist presented my case to the Harvard board of medicine as he and my PCP are 100% convinced that they are missing something, but even Harvard agreed with the diagnosis though they too believe they're missing something. It took them over a year of meetings, reviewing my case (I had to sign a fucking books' worth of release papers!) and supposedly put in dozens upon dozens of hours reviewing all of my lab & test results yet can't quite put their finger on the *EXACT* issue at hand.

I got a double whammy as altogether I've spent 44 or 45 days hospitalized @ Jefferson Headache Center @ Jefferson University hospital. I have NEVER seen a Dr. so dedicated, running what had to be several dozen different tests, trying over 50 medications and again, feel they're missing something! I have not had a "headache free" (not headaches as I used to know them and I still do get "those"..... the pain with "these" is 100% focused behind/around my eyes) minute since Jan 18 2004!

It sucks to not have answers but I am doing better than I was. I mean, my life isn't anywhere near what it once was, but I'm nowhere near as bad as others are, either. I mostly struggle with pain and sheer exhaustion. No matter what though, you have to continue to push, find Dr's you literally are willing to bet your life on and get rid of anyone you wouldn't bet your life on.

One thing I must add. Everyone HAS TO BE their own biggest advocate. I've had other Dr's, my parents, in-laws, sons and friends (amazingly, never the whore) advocate on my behalf though that was of their own doing. I learned real quick that if you don't be an incredibly strong advocate on your own behalf that you're not going to get the best care there is. Still, I'd LOVE to have all of the answers but it seems they don't exist.

CptKirk

 

[Pongoandperdi15]

Yes doctors always do that, I fit the description for b12 deficiency all the conditions I suffer from are listed. I don't know how many times I've been tested for the same old things diabetes, cancer, liver function, kidney function etc over and over again to be told nope that's fine you don't have any of it I'm like yes I know..... I've asked them for b12 test and they won't do it my only option is to pay for a private one. I read an article about this not so long ago

Patients’ experiences of disease should be taken more seriously, says study

Clinicians ranked patient self-assessments as the least important type of evidence during diagnosis

www.theguardian.com

 

[Joeysms]

sorry to read you had a bad experience with this doctor. hopefully you can find a better doctor who you like and trust. for me doctors are long term relationships if it isn't a match i move on until i find the doctor who is a match. also for me there has to be give and take open discussion not just me listening but being heard as well. the majority of my experiences have been positive. never rushed plenty of time to chat and address questions and concerns. my doctors go the other way with overly concern and checking everything, but then i do have some serious health issues. simple follow up appointments can end up with going to the lab for blood work and/or tests, so i keep my timing open. my best experience was with a doctor i loved who since retired but was great. our first appointment was between two and three hours and said to me i would like to be your doctor and asked if i wanted him to be my doctor. i never had a doctor ask me if i wanted him or her to be my doctor it was cool. there are some really good doctors out there don't give up

 

[Pino]

BTW, I always look for a female doctor because they usually have better bedside manners.

This is true in my experience either. All of my "usual" doctors are now females, my family doctor, Urologist, Neurologist, but for some specialties it is close to impossible to find a "female version" of it, for example the Orthopedist and Rheumatologist are only available as males where i live.

For my Urologist i am really happy, she is great, and she knows most of her colleagues are a**holes. My Neuro-Urologist changed by itself, because the clinic throw that a**hole out ("bad behavior") and so i got transferred his boss, who is female and much, much better.

I won't go to the Rheumatologist for some time, it is not that urgent at the moment, and the prescription can also be done be my Orthopedist, who is much nicer overall.

There is not much sense for me to go a diagnostician at a big clinic, @CheshireCat, because ME is still very unknown and there is only one clinic doing research of it in Germany, and that is far away and they are full. I will just do my normal things now for a while, to much energy lost on that disappointing visits.

I already accepted there will be no cure for me anytime in the future, 18 years ago i did believe in research, but barely anything happened.
Even with the Pandemic and many, many new cases of ME it is still much to slow in progress.
My life expectancy is about 10 years left officially, not much time for developing anything in the pharma industry.

 

[CptKirk]

This is true in my experience either. All of my "usual" doctors are now females, my family doctor, Urologist, Neurologist, but for some specialties it is close to impossible to find a "female version" of it, for example the Orthopedist and Rheumatologist are only available as males where i live.

For my Urologist i am really happy, she is great, and she knows most of her colleagues are a**holes. My Neuro-Urologist changed by itself, because the clinic throw that a**hole out ("bad behavior") and so i got transferred his boss, who is female and much, much better.

I won't go to the Rheumatologist for some time, it is not that urgent at the moment, and the prescription can also be done be my Orthopedist, who is much nicer overall.

There is not much sense for me to go a diagnostician at a big clinic, @CheshireCat, because ME is still very unknown and there is only one clinic doing research of it in Germany, and that is far away and they are full. I will just do my normal things now for a while, to much energy lost on that disappointing visits.

I already accepted there will be no cure for me anytime in the future, 18 years ago i did believe in research, but barely anything happened.
Even with the Pandemic and many, many new cases of ME it is still much to slow in progress.
My life expectancy is about 10 years left officially, not much time for developing anything in the pharma industry.

ME? What is that?

 

[daylight]

This is true in my experience either. All of my "usual" doctors are now females, my family doctor, Urologist, Neurologist, but for some specialties it is close to impossible to find a "female version" of it, for example the Orthopedist and Rheumatologist are only available as males where i live.

Same. I get the sense there is more empathy and have switched as I can. The patient loads many doctors are under is not something I would want as a career.

I already accepted there will be no cure for me anytime in the future, 18 years ago i did believe in research, but barely anything happened.
Even with the Pandemic and many, many new cases of ME it is still much to slow in progress.

Not at the current time but, never give up hope. Break throughs in genetics and medicine may not cure, it can extend and keep things in remission.

 

[Edgewater]

And this is why so many people support a multi-billion dollar homeopathic/alternative medicine industry, especially here in the US. It may be placebo BS, but at least people feel like they are getting somewhere.

BTW, I always look for a female doctor because they usually have better bedside manners.

Not always and with an increase number that are strictly blood test response driven!
Be mindful of those folks!

 

[Edgewater]

I have had several issues since I had COVID-19 in late 2020. My GP Doctor whom I have to start with because that is the INSURANCE way has blown my issues off for 3 years. Now I raised hell about it and I am going through testing for the issues to see if they can figure it out. One Is Incontinence two techs. doing the testing say there are a lot of people like me going through different testing and all are saying they have no idea why I am Incontinent. But still testing for other issues.

Please understand that in the World of Incontinence 'why' is not fully understood, likely as a result of so many reasons are hidden or masked from the standard tests. This is especially true when the source may involve the spinal cord.

 

[Pino]

ME? What is that?

Myalgic Enzephalomyelitis (ME), also known as Chronic Fatigue Syndrom (CFS) or SEID. ICD Code is G93.3.

About 30% of LongCovid cases fulfill the definition of ME, but it is treated as a new disease in most studies.
Usually it is described as "post-viral-multi-system-autoimmune-illness".

I personally explain it like this: "The unknown sister of MS", as about 80% of symptoms are the same.
MS attacks the CNS and ME attacks the autonomic / peripheral nervous system (ANS) mostly, main symptom of ME is PEM, post exertial malaise,
but it has got about 1000 symptoms, like MS has got also.

I got this after some unknown virus infection when i was 29 years old, i was told to be bedridden with 40 and dead with 50.
I was able to prevent this with an enormous amount of effort in all directions, but i can not escape the fact it is getting worse every now and than.

My incontinence is part of it or of some comorbidities.

It is hard to find a doctor knowing AND taking it serious, medical gaslighting is extreme with this condition.
These days i almost not mention it at new doctors, but only the commodities, like POTS, Polyneuropathy, Dysautonomia or Neurogeniv Bladder.