Dealing with disbelieving doctor

[Shoshana]

May the day for all our Cheesus lists come soon

Thumbs pressed !

We can add that in, to our PR list of terms. Thanks for sharing that with us, @Joh

Even though it is not a new term, it IS new to many of us, and we like to learn from each other.

I do not have a written Cheesus list, but I KNOW who they are!

 

[Gingergrrl]

think a new term is coined - Cheesus list.

I love it!

I follow your journey closely, so I guess I'm surprisingly well informed for someone who's on another continent and in bed. Fingers crossed (in German is would be thumbs pressed) that your treatment continues to be successful and covered by insurance.

Thank you and if I could, there are three Neuros, a rheumy, a pulmonologist, and my former PCP that are on my Cheesus list but it is not in my best interest at this time to say anything. The worst of all the docs I mentioned, who came close to destroying my chances of getting treatment, was a Neuro at Stanford but it would truly work against me to ever contact him again and I do not intend to.

May the day for all our Cheesus lists come soon.

Amen! Fingers crossed and thumbs pressed!

Edit: Cross posted with Shoshana!

 

[lllamamom]

I add the doctor to my hitlist. My hitlist is a list of doctors who I have found to be negligent in their duty of care towards me.

Once I have objective evidence of what is wrong with me, I will write to these doctors individually, explaining to them how their negligence and arrogance causes harm. I will suggest that they know less than they think they know, and that they should practice with humility so as to make sure their damaging attitude does not cause further harm to people in the future. I will ask them if they entered medicine to stroke their egos or help sick people. I don’t expect a response.

Cheesus, brilliant idea! I will caution folks though. I complained about an inept doctor to one I was still seeing. Within a month, I found I'd been labeled a "difficult patient" in the local health group, and getting appointments with anyone became very hard. Fortunately, I figured it out, and pointed out to the doctor I was seeing that this action was causing problems in getting treatment. She immediately worked to get that removed, and indeed cited my cooperation and politeness.

 

[Whoops]

There are only two doctors in the town that take our insurance. Sigh. It didn't help when he did the useless "Squeeze my fingers, push up on my hands, etc" tests and pronounced me "plenty strong". Telling him I've lost +50% of my muscle strength apparently didn't register. All he saw was a mid-60s woman who could turn his lily white fingers whiter. <evil grin>. I'm about to quit being polite. I need help, not platitudes!

As a 6' 5" 285 lb male, I feel where you are coming from. My previous neurologist who was literally half my size did the push/pull tests and told me that I did not have any indications of weakness, I about lost it. I could have thrown this little person across the room 10 years ago. As a former avid biker, hiker and backpacker, I have always had incredible leg strength and in the past could easily max out the leg presses at the gym and do a full set at the max weight of 600 lbs without breaking a sweat. So I think it is especially funny that a puny toothpick doctor even thinks he is capable of accurately evaluating a decline in my strength. Why isn't there a more quantitative method of measuring strength and/or weakness?

 

[lllamamom]

Why isn't there a more quantitative method of measuring strength and/or weakness?

There is--however, the meters seem only to be in hand specialist's offices, or such. Everyone else relies on the ridiculous "squeeze my finger". I agree with you, Whoops, I'm not your size, but often think about the amount of hurt I could put on a doctor if I took them literally. Indeed, one snippy doctor told me I was "too strong" for my age. I just looked at him, and asked if he'd ever heard of working out. He chided me for "not going to a gym". I pointed out that the nearest gym was 50+ miles away, and the barn, with weight lifting <hay bales, poop shovels, wheelbarrows>, cardio <moving the animals, chasing the dogs, getting rid of the rattlesnakes> and endurance--too numerous to list here--was 100 yards away. And cheaper.

I suggest that there be a coordinated campaign here in the US to bring ME to the forefront--make May 12, ME Awareness Day, something that gets covered in the local news, even if it means spending our entire "envelope" for the period. Otherwise, nothing will get done. UnRest got us started on the path--what about those of us able to, calling or writing NPR, or wherever, and saying "that's a start, but there's more of us. Here's our story..."

 

[RWP (Rest without Peace)]

Needless to say, I'm not going back. But how do others deal with this prejudice and ignorance?

Excellent job of fighting back! Have you seen this new article in the New York State Family Physicians mag/journal by Mary Dimmock et. al.? We all should have a copy handy when encountering ignorant doctors for the first time!

http://forums.phoenixrising.me/inde...n-me-by-mary-dimmick-et-al.57746/#post-956210
http://forums.phoenixrising.me/inde...n-me-by-mary-dimmick-et-al.57746/#post-956210
Sorry for your suffering.

RWP + PWR

 

[Daffodil]

i say, "alright" with a smile and walk out of the office. stopped trying to argue a long time ago

 

[lllamamom]

Excellent job of fighting back! Have you seen this new article in the New York State Family Physicians mag/journal by Mary Dimmock et. al.? We all should have a copy handy when encountering ignorant doctors for the first time!

http://forums.phoenixrising.me/inde...n-me-by-mary-dimmick-et-al.57746/#post-956210

That is a great article!

My GP last week asked for information. I'm giving her this article, the physician's research from me association.org.uk, and one other long article. At least she asked! Fingers crossed

 

[Mel9]

Excellent job of fighting back! Have you seen this new article in the New York State Family Physicians mag/journal by Mary Dimmock et. al.? We all should have a copy handy when encountering ignorant doctors for the first time!

http://forums.phoenixrising.me/inde...n-me-by-mary-dimmick-et-al.57746/#post-956210
Sorry for your suffering.


RWP + PWR

I have my copy printed out and ready

 

[RWP (Rest without Peace)]

That is a great article!

My GP last week asked for information. I'm giving her this article, the physician's research from me association.org.uk, and one other long article. At least she asked! Fingers crossed

That's wonderful! Hoping for the best!

RWP + PWR

 

[Stretched]

Okay, folks, I'm claiming a point for not throwing things. Called a doctor that had been recommended to me, as our health care got involuntarily changed the 1st of the year. Under "major complaint" I said CFS/ME, and immediately got told that it's bull****. ...
Needless to say, I'm not going back. But how do others deal with this prejudice and ignorance?

I’ll join your anger, frustration, against this doctor and his silent contingency... . I am w/o a doctor. A few years back I got referrals to try non affiliated CFS doctors.

I called and each appointment administrator probed for my specific illness. I told them in a round about manner about “real CFS,” bypassing yuppie flu and other frivolous
diseases. Each called back within a few days stating they didn’t treat CFS, as if they were card carrying anti-CFS club members.

I was so livid I wanted to go by the CDC (nearby) and pick up (abscond with) some toxic neuocleotide Tiger urine or equivalent near lethal nuclear contaminated monkey poo and send it to each good doctor, smeared all over the insides of sealed plastic envelopes on top of mints. I didn’t, of course after I got over my rage,

Instead, I decided on a mail campaign, like resume sending to another 30 prospective GPs. All neat, tidy, polite. I did not get so much as a phone reply! Well, that did it for me. I’ll learn it myself, having degrees and experience in academic publishing. I’ll tell you this, these good old boys were graduates of or affiliated with Emory Universty.

I don’t have an answer for you but my other specialists are no way Emory affiliated. My opinion on this one is litigation, of a class action nature against the AMA and individually against the would be defendants. I think this as a group action is the only way we’re going to get legitimate international attention and respect. The problem is who we’re going to as point man to fund, and the other to run the litigation?

 

[lllamamom]

Hang in there, folks, there's a bit of hope. I mentioned that my GP asked for information? And that I basically flooded her. Her nurse called back today, and said "Dr. said to tell you thank you. The information entirely makes sense, especially in your case" .Hello? A tiny bit of acceptance?

Much better, I think, than another doctor I've been trying to work with, who has decided that all CFS is diet based, or because of a recessive MTHFR gene (seems to be the latest "craze").

 

[Ruthie24]

As a 6' 5" 285 lb male, I feel where you are coming from. My previous neurologist who was literally half my size did the push/pull tests and told me that I did not have any indications of weakness, I about lost it. I could have thrown this little person across the room 10 years ago. As a former avid biker, hiker and backpacker, I have always had incredible leg strength and in the past could easily max out the leg presses at the gym and do a full set at the max weight of 600 lbs without breaking a sweat. So I think it is especially funny that a puny toothpick doctor even thinks he is capable of accurately evaluating a decline in my strength. Why isn't there a more quantitative method of measuring strength and/or weakness?

I have had the same experience. I used to do those muscle tests on patients and when my neuro did one on me, I told him I had 90 year-olds who exerted more pressure than he did during my supposed strength test.

Those muscle tests are usually used on a person with a neurological or orthopedic disorder so you can compare one side to the other and/or look for functional strength deficits. They are worthless for telling us if we have lost strength compared to our pre-illness level.

For the record, there are dynamometers that can be used to document the number of pounds of pressure you are able to exert on a strength test but they have not caught on in most practices as they are a bit awkward to use and, although supposedly reliable, don't always seem to be.

Most medical providers are taught by the "that's the way we've always done it" method and most are quite happy to go on practicing just that way.

 

[lllamamom]

dynamometers that can be used to document the number of pounds of pressure you are able to exert on a strength test

Thank you, Ruthie24, I couldn't for the life of me remember the name of the gizmo.

As for "that's the way we've always done it"....oh, yes.

Have to report a tiny, tiny win: walked past the arthritis doctor's office (where one supercilious jerk told me "at your age you should expect a little ache"), and noticed that the jerk is GONE off the list of providers! I stuck my head in just long enough to say hello to the nice PA-C that had tried to help, and found out that the GP I'd given the pile of information to was sharing it! There's faint hope...

 

[RWP (Rest without Peace)]

Have to report a tiny, tiny win: walked past the arthritis doctor's office (where one supercilious jerk told me "at your age you should expect a little ache"), and noticed that the jerk is GONE off the list of providers! I stuck my head in just long enough to say hello to the nice PA-C that had tried to help, and found out that the GP I'd given the pile of information to was sharing it! There's faint hope...

That's such encouraging news! Thanks for updating us!

RWP + PWR

 

[Sundancer]

there are two on my cheesus list, i will not go into detail. neuro and intern
But even though that's 15 ( no 16 ) years ago, I still remember, painfully. They'll both be retired now. But I know that on the day they stand before Petrus, a frown will be their part.

since then I have not visited a specialist and told my new GP that i will not start with it either.

But new GP ( the old one retired) is nice. He believes I'm ill. He comes to my house so that I do not have to go out. Looks at bloodwork with me, did another thyroid because I saw a bad trend ( yes, now looking what's wrong) , listens to how I'm doing, and what, and why.

I think, more one can not hope for in these days of MEbashing.

Told him about Myhill, that I have an interview with her. Would he care to read that?

Oh yes, please. So it lays here, printed. Waiting for his next visit.

 

[Alexi]

I add the doctor to my hitlist. My hitlist is a list of doctors who I have found to be negligent in their duty of care towards me.

Once I have objective evidence of what is wrong with me, I will write to these doctors individually, explaining to them how their negligence and arrogance causes harm. I will suggest that they know less than they think they know, and that they should practice with humility so as to make sure their damaging attitude does not cause further harm to people in the future. I will ask them if they entered medicine to stroke their egos or help sick people. I don’t expect a response.

I already sent a similar letter to one doctor. He had prescribed me GET. I highlighted all the problems with the PACE trial then asked him if he had any treatment for me with a good evidence basis. I never heard back from him. He is still on the list.

My list is long too.....

 

[lllamamom]

Want to cry. Gave some of the current information to my functional medicine doctor, who previously seemed receptive, as I needed to go back on valacyclovir. I don't know what happened, but got essentially a backlash from her, saying no insurance would approve the suggested year of it, it was dangerous, and ill advised. HUH? I looked at the research again, and nowhere does it mention these problems. I'm in the US, where admittedly ME research and knowledge is still in the stone age, but really? Dangerous? Far fewer side effects, from what I've been reading, than the Lyrica, or other suggested meds.

Anyone else have this backlash?

 

[RWP (Rest without Peace)]

Want to cry. Gave some of the current information to my functional medicine doctor, who previously seemed receptive, as I needed to go back on valacyclovir. I don't know what happened, but got essentially a backlash from her, saying no insurance would approve the suggested year of it, it was dangerous, and ill advised. HUH? I looked at the research again, and nowhere does it mention these problems. I'm in the US, where admittedly ME research and knowledge is still in the stone age, but really? Dangerous? Far fewer side effects, from what I've been reading, than the Lyrica, or other suggested meds.

Anyone else have this backlash?

Sorry for the reaction. It seems to me that the Dr. is unfamiliar and therefore uncomfortable, worried about a bad outcome. My wife & I have been listening to a recent video from Dr. Montoya in which he discusses side effects from an antiviral (but it might be the other v-drug), but I'm not sure which. Here's the link: http://forums.phoenixrising.me/inde...feb-2018-partly-on-antiviral-treatment.58055/

Anyway, I think he said that the reason for all the worry and warnings arose from its use in cancer patients and others who had a greater risk of complications anyway. In other words, they were overblown for ME patients.

That may not help you with this doctor, and I seem to remember that your options were limited. And it could be the other antiviral he was talking about. BTW: There may be other threads about this info/video as well.

Our current doctor is very risk averse as well. Again, so sorry.

RWP + PWR

 

[ChrisD]

I hadn't had a GP appointment for over a year until yesterday and felt that it would be appropriate to have a general check-up seeing as my health is really not great, and I was hoping to have routine blood tests which I thought was sensible. I saw a Locum doctor and to be fair to them, it is tricky to achieve anything in ten minutes, and I also wasn't expecting to.

But what I find interesting is whether we should even mention ME at the start of the appointment as it seems to turn them off immediately and if you have no new symptoms (they are really focused on symptom changes) then you receive a sort of ''well what do you want me to do for you?'' attitude. This guy was really friendly, understanding and cooperative yet also quite dismissive of the idea of ME and despite the fact that I have been through a specialist ME service, he was really hung up on the fact that I didn't have a diagnosis (which I do, but for some reason the service had been reluctant to record it). He seemed really intrigued as to why a ''27 year old male'' would be in this condition and not be working, and really innocently showed a complete lack of understanding for ME.

I don't blame this doctor at all, and he didn't have an attitude about it that some others have experienced but I was just quite taken a back when he explained that he couldn't write me off work for benefits when there was no clinical evidence of illness, which seems like a really dated view since I thought we were supposed to be at a stage now where we were past that logic, of lack of.

I dread the moment when they scroll back through my medical records to 4 years ago which show anxiety and depression symptoms (before ME) and in an instant decide that it's a psychiatric case. I also asked for a stool test and SIBO test, to which he questioned what symptoms I had that would require that, and I responded with ME symptoms which apparently wasn't specific enough - it just shows a complete lack of knowledge into ME research.

Sorry I didn't want to hijack this thread but thought my story might be relevant.