Need some help dealing with doctor

[Alpacas]

@bansidhe

My mother was diagnosed with fibromalgia, if it hadn't been for her persistence and her constant seeking for other doctors, they wouldn't have found out why she was in such a pain.

If your GP still insists on focusing his attention on other symptoms, just go to another doctor. Don't waste time with him.
Within all those dotors that can't find anything wrong with you, there will be someone that is either a specialist for that, or knows where to look.

I hope you'll find someone that understands how painful fibromalgia is.

[CuriousParty]

There are lots of illnesses that are not the "usual suspects". It's a well-known phenomenon that some doctors don't want to roll up their sleeves and start looking beyond those suspects - if they can't solve it in a few visits, they shrug that it's "all in the patient's head". However, there usually *is* "something physical to treat". They just have to find it.

And that right there is my major concern about a doctor suggesting a psych eval at this point. I should have been more clear about that. If he suggests I'm imagining the whole thing, it's firing time. I can see suggesting a psych eval for someone who is depressed or anxious because of a medical condition, but that's not the case for me. Yet, anyway. I'm just frustrated and crabby so far.

Keep in mind though that a suggestion of a psych eval may be part of the rule-out process. There are docs (not as many as some think, but they do exist) who wave off the unexplainable with "It's all in their head," but in my experience those docs often don't ask for the eval - they just assume. Usually, when I've worked a case that involved a psych eval the doc was genuinely trying to rule in/out the possibility of core/contributing psych factors, and usually they took the information (whether it was yes, no, maybe, or just a little) as useful data in the continuing search for answers. Also, it can be very helpful for justifying some of those extra expensive tests for very rare conditions.

Short version: a psych eval recommendation doesn't necessarily mean the doc thinks you are crazy/ faking.

[Twik]

A good point - depression can present with physical symptoms (although I think technically depression is now viewed by physicians as a physical illness that causes mental/emotional symptoms.)

[Clumsy Ninja]

I'll put the disclaimer right up front: No medical advice, please! 

[BG] I've been dealing with a mysterious, chronic, painful medical condition for over seven months now. Numerous tests have ruled out anything obvious, meaning that the culprit is likely to be something like fibromyalgia or interstitial cystitis (or both) - one of those annoying "invisible" maladies.

I fired my original primary care doctor because he was inexcusably rude to me on more than one occasion. I've seen his replacement, New Doctor, twice.[/BG]

The first time I saw New Doctor, he ordered the last of the screening tests people in my situation generally go through. They were negative.

The second time I saw New Doctor, I asked where I go from here in my efforts to find out what this is and treat it. He side-stepped that question, instead focusing on the fact that my disk had herniated (I was dumb enough to mention it), then turning his attention to a pimple. A pimple! When I pressed further, he said we'd talk about the mystery illness when I come in for a recheck in three weeks.

I have gotten the "come back in x number of weeks" response from a number of specialists I was referred to. When I come in, they seem terribly surprised that there is still a problem, since the tests were negative, and I wind up being routed back to my primary care doctor.

I have a nasty feeling New Doctor is going to use the avoidance route (again) when I go in for my recheck. It's been seven months and I want to focus on this problem and get some answers and get on with my life. This has been beyond frustrating and I'm about ready to throw a fit.

Any suggestions for getting him to understand that this illness is having a major negative impact on my life and I want it to be addressed? Without throwing a fit, I mean? Saying "This illness is having a major negative impact on my life and I want it to be addressed" seems to have no effect.

I don't post much, but this is something familiar for me and so far I've only read the opening post. OP I have Lupus, Fibromyalgia and some other things which all began around 1985. I've seen a lot of doctors! Some pretty bad ones, some that I disliked but were good doctors and some total jerks.

My first suggestion is to find a rheumatologist. Every doctor wants to run the same tests, so get used to that part. You can also say 'no' to the physical prodding (pressure points) if it hurts too badly. There are a lot of doctors resistant to taking on a patient they can't really fix.

Keep a notebook with symptoms, foods you eat, your sleep cycle and your moods. Plus any medications even over the counter ones.

You can tell this doctor he is not a good fit. Its okay to do that! You hold the power, its your body.

It took me over 15 years and countless doctors to find the way that worked for me. It included Cognitive Behavoural Therapy, some physical therapy and too many medication attempts than I want to think about. But I found a system.

If you can have someone go with you, sometimes that can bolster your confidence and at the very least having support helps.

I wish you luck in this journey.

[chicajojobe]

I'll put the disclaimer right up front: No medical advice, please! 

[BG] I've been dealing with a mysterious, chronic, painful medical condition for over seven months now. Numerous tests have ruled out anything obvious, meaning that the culprit is likely to be something like fibromyalgia or interstitial cystitis (or both) - one of those annoying "invisible" maladies.

I fired my original primary care doctor because he was inexcusably rude to me on more than one occasion. I've seen his replacement, New Doctor, twice.[/BG]

The first time I saw New Doctor, he ordered the last of the screening tests people in my situation generally go through. They were negative.

The second time I saw New Doctor, I asked where I go from here in my efforts to find out what this is and treat it. He side-stepped that question, instead focusing on the fact that my disk had herniated (I was dumb enough to mention it), then turning his attention to a pimple. A pimple! When I pressed further, he said we'd talk about the mystery illness when I come in for a recheck in three weeks.

I have gotten the "come back in x number of weeks" response from a number of specialists I was referred to. When I come in, they seem terribly surprised that there is still a problem, since the tests were negative, and I wind up being routed back to my primary care doctor.

I have a nasty feeling New Doctor is going to use the avoidance route (again) when I go in for my recheck. It's been seven months and I want to focus on this problem and get some answers and get on with my life. This has been beyond frustrating and I'm about ready to throw a fit.

Any suggestions for getting him to understand that this illness is having a major negative impact on my life and I want it to be addressed? Without throwing a fit, I mean? Saying "This illness is having a major negative impact on my life and I want it to be addressed" seems to have no effect.

I understand where you're coming from with this. I have a condition that is not invisible, as a matter of fact it is very visible but they're easy to dismiss as 'normal....well, not normal, but common enough' and to just treat the symptoms rather than the cause. Also, easy to make someone doubt themselves, about whether they're just overreacting/being vain about certain symptoms.
I'd say just be persistent. Keep letting him know that it's having a significant impact on your life, don't be afraid to give specific examples "I'm missing a lot of work because of the pain and I'm worried about the safety of my job!", or even cry. Don't 'throw a fit' as it were, but you don 't have to completely hide your frustration.

Also doctors telling you to come back and then seeming surprised since the test were negative. I understand why that's frustrating, but keep in mind they see several patients each day, so they might not necessarily remember what you discussed at your last appointment. Yes, ideally, they go back over your chart again, but, then again, the chart is telling them that all the tests were negative. So maybe just be prepared to have to review what you've already been over and what the problem still is.

[emwithme]

Em, thanks for your post. Just to clarify I don't think my example would apply to you. I've met patients with the conditions you have and they're definitely not crying but there are ways you can tell they're in pain. Watching how they enter/exit the room. Watching how they sit, how they stand, how they describe the pain, how they work through the pain. The short of it is, no one who is experiencing 8/10 back pain should ever be "hopping" around, which is why I used that particular word with that particular condition.

Allie over at Hyperbole and a Half has a fantastic (humorous) post describing the pain scale here: http://hyperboleandahalf.blogspot.com/2010/02/boyfriend-doesnt-have-ebola-probably.html

I totally *heart* Allie (and I like the Alot alot!)

I have printed that pain scale out and have given it to my GP (it's in my records), my OT (who thought it was hilarious and now has it in her office) and my pain consultant. 

[snappylt]

If you can wade through my story, I do have a suggestion at the end.

I have a relative who has a medical problem that continued to slowly get worse for about two years.  He was seen by four or five specialists, including two different medical school professors at two different medical schools. Different tests kept ruling out different possibilities, but none of the doctors could say what the problem actually was.

Relative went on a family vacation to his wife's old hometown, taking his (inches thick) medical records with him in case he had to be hospitalized while away from home.  One of his wife's childhood friends is a manager at a medical lab.  She asked the wife if she could look at the medical records, just in case she could spot anything.  She looked through his blood tests and immediately spotted that the value for one particular blood component was abnormally low in several tests over several months time.  A lack of that particular substance could explain at least some of the symptoms.  Lab manager friend told my relative to insist that his doctors look at that result and be absolutely sure that that was not his problem.

When relative got home he went to his GP, pointed out the test result and asked if that could be the problem.  GP said he doubted that would explain things, but that to humor my relative he would give injections of the missing component to see what would happen.

Well, that solved the mystery.  Once he started getting regular injections, my relative's condition improved.

By why did his GP and all of his specialists, including the two professors, miss that one particular abnormal lab value that the lab manager spotted at once?  Were they all concentrating on the "fancier" tests that they'd ordered to check for more "exotic" diseases and skimming over the basic blood test results too quickly, and thereby missing the clue?

OK, thanks for reading my story.  Now, for my suggestion, could you find (possibly hire) an outsider who could look through your various test results from scratch to see if the outsider could spot anything abnormal that your Old Doctor and New Doctor have missed?

Ideally you could politely ask New Doctor to please go back over all the tests - not just the fanciest ones - to see if there is anything abnormal.  But I don't know how New Doctor would react to the suggestion that she has missed something.

[bansidhe]

Thanks again, everyone - especially those of you who have similar problems and have been down the same road. I swear some days I feel like I'm going nuts and must have dreamed up all these problems, so it's good to hear from obviously rational people who've experienced pretty much the same thing.

I'm in the process of documenting symptoms, tests, etc. My next move is going to be to ask to see a rheumatologist and a nutritionist. My follow-up appointment is this coming Thursday, so I'll update this thread with the results.

[camlan]

bansidhe, let me share the story of my nephew's diagnosis.

When my SIL was pregnant, her first ultrasound revealed some orthopedic abnormalities. The next few months of her pregnancy were spent getting tested for various birth defects, but all the tests came up negative.  When Jack was born there were many more problems than the ultrasounds had shown. He couldn't breath unassisted, there were multiple orthopedic issues that had not been visible in the ultrasounds, there were several major medical problems.

Did I mention that my SIL is a doctor in family practice? And that she had an OB doctor who specializes in problem pregnancies? And that she had the baby in the major teaching/research hospital in her area, to ensure that Jack would get the best of care from the start?

Jack has a list of 13 different birth defects and spent six months in NICU.  No one had a clue as to what was wrong. The doctors involved with his care were calling and emailing colleagues all over the US for help and information, but no one could help. In the meantime, they treated the symptoms, because that was all they could do. My SIL was doing her own research at the same time. No one could come up with anything to explain the particular set of issues Jack had. And believe me, they were trying.

Finally, when he was a year and a half old, they got a recommendation to see a doctor 500 miles away, in another state, and they got a diagnosis. Jack has a very rare syndrome. He has almost none of the common symptoms of that syndrome, and pretty much all of the rarer symptoms, the ones that almost never show up.

Fourteen years later, Jack is doing very well, in large part thanks to a knowledgeable doctor who has been able to oversee his care and therapy.

The lesson to draw from this is that if you do have a rare illness/syndrome, even the best of doctors might miss it, because they don't know what to look for. It isn't that they aren't trying, it's that they might never have even heard of the illness at all. My SIL treats children all the time. She'd never heard of the syndrome that her son has--not even once in med school.

Keep asking for referrals. There is an answer out there somewhere. But you need to find the person who can direct you to the right doctor or hospital, where there is someone who has knowledge of what's wrong with you.

[bansidhe]

I had my follow-up appointment with New Doctor today and things actually went reasonably well - and I didn't even come close to throwing a fit. 

I've got a referral to a neurologist, which is a step in the right direction. We've skipped the nutritionist for now which I'm OK with, as I think I'm probaby being a bit paranoid on that front.

So all is well for now, and writing everything down will come in really useful when I see the neurologist.

Thanks for all your suggestions, everyone!

[kkl123]

May I suggest a book for you?  It's "How Doctors Think", by Jerome Groopman -- one of the most humane and useful books I've ever found, written by a distinguished doctor.  It's an easy book to read, but one with some very useful questions at the end for getting a diagnostic process back on track.  One of his useful questions is, "What else can it be?".  There's also a good section in there on deciding whether to fire a doctor.

It was a best seller in 2007, so there are plenty of copies at libraries, and many available used.  Here's part of the opening chapter: http://www.npr.org/templates/story/story.php?storyId=8892053
and a review: http://www.masscfids.org/resource-library/13/187

The sort of companion to that book is "Your Medical Mind" -- equally useful, imho.
http://yourmedicalmind.com/index.html

[JoyinVirginia]

Thanks for the update! Glad your follow up went well. Keep us posted!

[Pippen]

The urgent stuff will get dealt with and there may be other patients that need to be attended to first. It may be frustrating and upsetting for you but in my mind if you are having tests and scans for something you think may be wrong and there is no clear answer the Dr will be using all the information available to them to help you. That takes time and it is never just a simple matter of it being cut and dried.

Anxiety is terrible it really is. You need to establish with your Dr your expectations and let them know how it impacts on you. In turn your expectations of what they can achieve within a particular time frame need to be realistic. A test on Thursday may very well not see you having results until the next week. I think if you have a chat with them so you don't feel you are left hanging and have a greater understanding of the processes it will help you gain a feeling of control and also help with the anxiety you have around this.

[O'Dell]

Where's that *like* button? Glad you are back on track to finding what's wrong.

[elephantschild]

The urgent stuff will get dealt with and there may be other patients that need to be attended to first. It may be frustrating and upsetting for you but in my mind if you are having tests and scans for something you think may be wrong and there is no clear answer the Dr will be using all the information available to them to help you. That takes time and it is never just a simple matter of it being cut and dried.

Anxiety is terrible it really is. You need to establish with your Dr your expectations and let them know how it impacts on you. In turn your expectations of what they can achieve within a particular time frame need to be realistic. A test on Thursday may very well not see you having results until the next week. I think if you have a chat with them so you don't feel you are left hanging and have a greater understanding of the processes it will help you gain a feeling of control and also help with the anxiety you have around this.

Pippen, I think maybe you meant to put this in my thread.