Doctors are a barrier to testing

Messages
70
Likes
100
There are a number of tests from specialty labs that I'd like to have performed but I've found that it's hard to find a doctor who will play ball.

Many docs are set in their ways and making even the slightest accommodation for a patient request is impossible for many of them.

Sometimes they'll deny testing for no substantive reason other than their preference. Often times getting their office staff to process the paperwork is a nightmare.

If something doesn't fit into their narrow way of doing things, they reject it.

Anyone else running into this problem?

Are there any solutions that you've worked out?
 

Wishful

Senior Member
Messages
4,766
Likes
8,664
Location
Alberta
I suggest asking the doctor for the reasons for denying the tests. Maybe it's an issue beyond his control, and you need to bring it to your government representative. Maybe it's simply laziness or work that doesn't pay well, and maybe he won't be honest about that, but maybe he will. Maybe he doesn't believe in the value of the test, in which case the two of you should discuss the evidence. Simply ignoring the barrier won't make it go away.
 
Messages
70
Likes
100
I suggest asking the doctor for the reasons for denying the tests. Maybe it's an issue beyond his control, and you need to bring it to your government representative. Maybe it's simply laziness or work that doesn't pay well, and maybe he won't be honest about that, but maybe he will. Maybe he doesn't believe in the value of the test, in which case the two of you should discuss the evidence. Simply ignoring the barrier won't make it go away.
Naturally that's where my mind goes to... the problem is that doctors also don't like being questioned at all or having to explain decisions that are rooted in selfishness (like it being too much effort, liability reasons, etc.).

So following through often leads to confrontation. I've even had a doctor "fire me" as a patient for asking for some kind of justification for not doing a test.
 

crypt0cu1t

IG: @crypt0cu1t
Messages
598
Likes
1,628
Location
California
There are a number of tests from specialty labs that I'd like to have performed but I've found that it's hard to find a doctor who will play ball.

Many docs are set in their ways and making even the slightest accommodation for a patient request is impossible for many of them.

Sometimes they'll deny testing for no substantive reason other than their preference. Often times getting their office staff to process the paperwork is a nightmare.

If something doesn't fit into their narrow way of doing things, they reject it.

Anyone else running into this problem?

Are there any solutions that you've worked out?
My best advice is to keep looking for doctors who are willing to do tests. I never would have broken out of the "CFS" diagnosis if I didn't pursue further testing.
 
Last edited:

Jyoti

Moderator
Messages
3,229
Likes
9,062
I've certainly had this issue arise. With a particular GP, who was 65% reasonable, I was able to employ on several occasions a combination of give and take. For instance, I knew I needed a tilt table test to diagnose OI or POTS. He thought that was silly. It is an expensive test and I was fatigued and probably a tad depressed with a soupçon of hysteria.

But I brought him the carefully done and presented results of five poor man's tilt table tests. He began to consider it, but maintained--as he always had-- that perhaps I didn't have ME at all but a cardiac problem that was making me tired. I knew this wasn't the case, but in the end we agreed that I would dutifully see a cardiologist and let him do all the standard testing and if that showed nothing pathological, we could move on to the TTT. In fact, that is exactly what happened and the TTT was definitive.

My best advice is to keep looking for doctors who are willing to do tests. I never would have broken out of the "CFS" diagnosis if I didn't pursue further testing.
On another occasion I asked for an upright MRI of the cervical spine. He just said no---I can't read it, I don't know how I'd use it and I won't order it. So then I had to go to the Center for Complex Diseases where Dr. Curtin ordered the 3T supine MRI favored by Bolognese in the first half hour of my visit.

It is very discouraging, @dyllanmurphy, particularly when you know you have more information than the gatekeeper who is standing guard over the tests that might really be game changers. Personally, I have changed GPs more than I would have thought. I don't want to--not at all--but I am not going to keep seeing and paying someone who doesn't respect me.
it's hard to find a doctor who will play ball.
I hope I have gotten better at winnowing out the self-satisfied jerks, asking better questions at the outset and then moving on quickly if the person treats me like I am a problem. I basically ask them if they are willing to play ball: I tell them I don't expect them to be an expert, but ask if they will work with me to look at and investigate various testing and treatment based on what I bring them. I just started with a new doc and I told her about the emerging Abilify prospect and asked her directly: would you consider prescribing that to me if I find enough evidence to feel comfortable asking you to do so?

And then as judiciously as possible I seek out specialists who seem like they have something in particular to offer me and my catalog of symptoms. Not everyone can do that, I know, so finding someone who is willing to work with you and learn with you is a big deal. And like a needle in a haystack. But what else can we do but look?
 

Aspen

Senior Member
Messages
145
Likes
341
@dyllanmurphy @bensmith Those doctors are just maddening.

, asking better questions at the outset and then moving on quickly if the person treats me like I am a problem.
This is brilliant.

Also - do you have any patient advocate resources in your area? Our hospital system has social workers in it - it’s hard to get connected to them but worth it. I helped a friend access that support once after a terrible misdiagnosis, it took multiple calls to different community centres (the hospital gave us the runaround) before we found an ‘in’. The social worker ended up helping a lot, she drew up a detailed timeline, helped put together research to prove my friend’s experience and made sure the docs knew she was taking notes, made them all be on their best behaviour. It’s so backwards to need another person to advocate for you especially when you already know exactly what you need - people really should just listen to you the first time! But whatever works I guess. If you have a trusted someone in your life who can keep a clear head and has time to go to appointments with you, they could play the same role.

When I first got sick I was on the wait list for a doctor so I had to see random walk-in doctors. I saw one doctor at the beginning who actually listened and moved my case forward a little, but I never could get her again after that. Had months of doctors brushing me off, refusing requests or repeating drugs that actually made me worse, like so many folks here I’m sure. All this with me being exhausted and often not even being able to talk during appointments - I would have to come in with a notebook already written with my request and my list of symptoms. I finally brought my dad along one day as an advocate, he is a very persuasive person. Made me feel like I was in high school seeing the principle, with my dad in tow! But then for some miraculous reason, that very same good doctor walked into the room, haha! She was shocked at how little progress we had made, I finally got a specialist referral that visit and got the ball rolling to connect me with a good GP. I didn’t need my dad for that after all... but sometimes I think the outcome would have been worse if I didn’t have my dad there as a plan B.
 

Jyoti

Moderator
Messages
3,229
Likes
9,062
Excellent point, @valentinelynx!

And I could add that some HMO's, like the one I had my healthcare through during the first four years of this illness, have not even recognized ME as a real thing or are still stuck in the GET/CGT era.

Kaiser Permanente Northern California officially changed its stance on ME just two years ago and started educating clinicians, listing it on their website, making outside referrals, etc. One doctor changed--with help from a patient (https://www.virology.ws/2019/03/11/trial-by-error-kaiser-permanente-changes-course/ )-- what had been up until then a very archaic response to patients.

I switched doctors a few times--some were kind and some not so much--while at Kaiser. But none of them were willing/allowed to do a thing for me other than order very basic bloodwork. It was illuminating to learn later that it was company policy, that no matter how well and thoroughly I presented my own situation and the research, I was not going to get anywhere.

I had no idea what was going on with my health either, but I knew something was desperately wrong. In the end, I saw a naturopath who was willing to order tests for me. It was infuriating to have to pay out of pocket for the care I had hoped to get through my insurance, but it just wasn't happening.

In other words, another piece of the strategy may involve assessing what is possible given health insurance (I don't know where you live @dyllanmurphy so don't know what kind of healthcare scheme you might have) as well as individual providers.
 

Wishful

Senior Member
Messages
4,766
Likes
8,664
Location
Alberta
It is an expensive test and I was fatigued
That word, 'fatigue', is a real problem. We are not tired. We are not suffering normal fatigue. It may be central fatigue, or it may be something fatigue-like. We really need a better term for it, that won't be misinterpreted as the type of fatigue that doctors more commonly deal with.
 

Jyoti

Moderator
Messages
3,229
Likes
9,062
@Wishful --so agree! And in addition to the complete absence of vital energy needed to engage with life, there are all the other awful things. I cannot count the number of times I have tried to describe my experience to people/friends who are feel sorry for me that I don't have the get-up-go to hike 10 miles and who are utterly amazed to hear that CFS is in large part so much more than being a bit tired. Even if that word--fatigue--or another more precise one could successfully convey our experience of being drained in a way that others can't really imagine, it would still be just the tip of the iceberg, no?
 

Wishful

Senior Member
Messages
4,766
Likes
8,664
Location
Alberta
Even if that word--fatigue--or another more precise one could successfully convey our experience of being drained in a way that others can't really imagine, it would still be just the tip of the iceberg, no?
Yes, but at least it would be one communication obstacle out of the way. If you say "fatigue" or "tired", most people think they understand what you are feeling ... and what works for them to deal with that (rest, fitness exercises, Red Bull, etc).
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,671
Likes
6,359
Its a numbers game once a doctor digs in their heels drop them immediately.

Keep doctor shopping until you find one who is open minded and not ideological. At times i have asked the doctor i am about to drop for a recommendation to a colleague who might give a second opinion.
But with ME finding and going to many doctors to find someone without a stick up their rear end is exhausting and not always tenable.

Also if your health insurance adds extra barriers that can get very messy.
 

Wishful

Senior Member
Messages
4,766
Likes
8,664
Location
Alberta
I know that, but at least they could be honest about it.
Discouraging doctors from ordering tests might border on illegality. It's probably a murky area, where the big money can't be convicted, and the doctors are caught between useless honesty and losing their practice. I think it's just one of those unpleasant facts of life that we just have to accept that it exists, and try to work around it. Yes, we should stand up against such things, but I expect that there are well-funded organizations that are trying to fight it and failing. :grumpy: