Need some help dealing with doctor

[HorseFreak]

It sounds like he might be in over his head with your condition and is trying to buy some time to figure it out or he's looking for every single clue. Doctors are still human so I wouldn't go in an interrogate him like he should be a walking internal medicine book on every uncommon disease, especially as a GP. Instead, I would be very calm and directly ask who he could refer me to who would could take the next steps. My GP did every test under the sun for my weird arthritis symptoms and after three visits referred me to an awesome rheumatologist who asked me about other problems that I thought were unrelated and minor which frustrated me. However, they were actually my major problem! The pain control I received for my other problems improved my quality of life substantially.

I know it's tough having a ghost of a medical ailment, but it's also very frustrating for your doctor as well. Best of luck finding a diagnosis and someone who can help.

[Kaymyth]

Man, some doctors and their hoops.  Some of them will indeed chalk it up to being in your head if they can't figure out what's wrong.  I've got a good friend with CFIDS who's been on that merry-go-round nonstop for the past 5 years.

Example:  she has periods of blindness.  She's had doctors tell her everything from, "You're imagining it," to "Well, you have a neurological illness, so it's probably related to that.  Learn Braille now."

She finally got a real diagnosis last month: ocular migraines.  So it's not in her head, nor is she in the process of losing her sight completely.  And it took a modeling shoot with an amateur photographer / professional optometrist to get the ball rolling. 

If your doctor's not helpful this time around, find another one.  Maybe try a DO; their medical training focuses on treating the person, rather than the symptoms.

[bansidhe]

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.

Do not be afraid to cry or show frustration.  That's what finally got my doctor motivated to try something that helped me.  Some docs must think that people who can remain calm while in pain aren't really in pain.

Now that's an interesting point. When I see doctors I always try to put on a brave face and not be whiny about things, plus I have a fairly high tolerance for pain, thanks to 30 years of lower back problems. Perhaps that's a mistake!

And to address a few other random points:

I can't self-refer to most specialists, so I'll have to convince New Doctor to do that. My symptoms affect multiple areas of my body, so I've seen GYNs, urologists, and GI specialists so far.

I'm giving New Doctor another chance because he was fine on the first visit: he listened and did everything I expected him to. On the second visit, I got the distinct impression that something really bad had happened in his life (possibly a death in the family) a couple of days earlier. My original appointment had been bumped because he was called out of the office unexpectedly and when I saw him, he seemed unusually distracted.

[mrsholles]

Sorry about your Dr problems,  bansidhe, but oh, so happy to see this thread!  I've got one of those invisible problems that don't have any objective proof. 

Kaymyth has it right - if they can't figure it out they label it "anxiety" and dust their hands.  One friend - it was ocular migraines, another heart disease.  Still another called every neurologist in town to get her DD seen asap.  Gullian Barr Syndrome - DD would have died by the time of the original neurologist appointment.   

It seems like it takes forever to get a diagnosis for some health issues.

[Trellia]

Sometimes you do have to 'be whiny' and tell things as they are. (Been there, eight years to a diagnosis with fibro.) If they're downplayed, the docs might not take that particular symptom seriously. Bring up anything that seems off, even if it seems completely unrelated. I also completely agree with the list.

Maybe give examples of specific tasks/activities that have become more difficult, and describe why and the sensations you get. Taking a shower, driving, hobbies, etc. Sometimes starting a 'symptom diary' can help, writing things as they occur instead of trying to remember everything. My mom came with me to all my appointments, which helped a lot because although I did the talking, she would remember things I didn't and could back me up.

In the meantime, good luck, that's a very frustrating place to be. (Hugs.)

[squeakers]

Do not be afraid to cry or show frustration.  That's what finally got my doctor motivated to try something that helped me.  Some docs must think that people who can remain calm while in pain aren't really in pain.

This.  I actually broke down in my urologist's office and asked to be sent for a psych eval. just because after a year of being seen every 3 months and being treated with ABX each time I was still in pain.  That got me an XRay and the diagnosis of "wow, your left kidney _is_ a kidney stone.  Surgery tomorrow!".

(Surgery helped some but 3 years later I am now waiting for a call back from his office with a referral to a university doctor because mine doesn't know what else to do for me.. kidney is necrotic partially.)

[onikenbai]

If it's fibromyalgia, welcome to 'forever trapped in the vortex of useless medical tests!  I finally gave up and accepted that my life is constant pain.  I was a tad embarrassed when I decided to go see my rheumatologist again and discovered he'd died five years ago.  That's how useful he was.

[Bethalize]

Please don't rule out any mental health help. I practise a particular kind of therapy. I have a case where a client who was diagnosed with M.E. (chronic fatigue). That's an incredibly hard diagnosis to get on the NHS. My diagnosis was that actually they had Post Traumatic Stress Disorder. This was later confirmed by proper clinical evaluations. It took six months to get the client to the point they faced their mental block and another three months of work but they made a much better recovery than they had ever hoped.

Psychological trauma isn't understood in the same way that the behaviour of bacteria is but great strides have been made in our understanding. The events causing trauma don't have to be dramatic either. They can be interactions between you and your parents for example. There are lots of real health symptoms which can be caused by PTSD. Join pain is the most obvious one I can think of.

[wyliefool]

Writing things down is really helpful--lists, symptoms, questions, previous tests.

If you're in the US you could try the 'Best Doctors' lists published by Castle Connolly. NY Magazine does an issue every year, but the company has these lists for other cities too. You might have to get a referral, but a lot of them take various insurances and the specialists are likely to have more experience w/ the 'weird' diseases. I've had good results and so has DH.

Psych evals--someone I used to work with was diagnosed 'depressed' for years. Finally one doctor told her 'you're the happiest depressed person I've ever met.' Yeah, she has MS. 

[bansidhe]

If your doctor's not helpful this time around, find another one.  Maybe try a DO; their medical training focuses on treating the person, rather than the symptoms.

That's exactly my plan if I can't get New Doctor to cooperate. You read my mind. 

Please don't rule out any mental health help.

Oh, I won't - don't worry. If I need it, I'll get it. It's just that I don't think there is any way this problem has any kind of mental/emotional trauma as its underlying cause as the symptoms have very specific, identifiable diet-related triggers. Finding out what all of those triggers are is both time-consuming and painful, so having a diagnosis would be a big help.

[Danika]

I'm sorry for what you're going through and, unfortunately, I can definitely relate!!!

I, too, have a mysterious painful medical condition. It started in my first pregnancy in 2007 and I've been in constant, every second of every minute of every day, pain too. Yesterday, in fact, I saw the 20th doctor that I've seen in these 5 years hoping to find some relief.

Ironically, I, too, have interstitial cystitis, in addition to the (seemingly unrelated) first medical condition, which is neuropathy.

Interestingly, both of mine are exacerbated by things I ingest - foods, drinks, medications, so it's possible that they are related.

I seem to have many doctors appointments a month and am always trying some new diet regimen to see if I can eliminate problem foods.

Sadly, the process has tainted me and I will say that I respect a lot of doctors less than I used to. I have had several do what yours did which is the attitude of "I have no clue what you have. But since you're here and I want to bill your insurance and make money, let's see if I can find something else to treat you for." I drop those doctors like hot potatoes. I find it insulting to my intelligence and to me as a person to be treated like that. I'm here for a specific problem and that's the one I want help with. Yes, I do have other ailments, but my neuropathy runs my life and makes me miserable, a pimple, for example, is so low on the priority list that I'm actually happy to have it just to take my mind off of the main pain.

I have stopped wasting time on doctors who are like this. I think a second chance is fine, but you've already given him that. You do not owe it to him. You owe yourself to find someone else. It takes time and effort to go to these appointments. We live 20 miles from our capital city and I find that the doctors and hospitals are better there, so now, appointments can take up half the day because I have to drop my kids off at childcare, spend money on childcare, drive to the capital city, wait for the Dr, etc. Anyone who doesn't respect me or seem to have a good plan of action, I discontinue seeing.

So, in your shoes, I would find another primary care doctor. Check out vitals_com, healthgrades_com, ratemds_com and yelp_com (I put in underscores instead of a period so a filter doesn't think they're spam or malicious) to see if people have good things to say about a doctor or not.

What has helped me tremendously is like a PP suggested - lists and charts. I have spreadsheets. I list all the doctors that I've seen before the one I'm talking to at that moment and their specialities. I list all the symptoms I have. I list all the things I've tried and their results (usually, more pain). I list the foods that I can tolerate (to demonstrate that living on honey and beef isn't very healthy and I would like to be able to eat things that would be better for my longterm health). I just list the facts and focus on those. I have not had to cry or use emotion. I just really try to describe my pain "It's like someone is driving nails into me at all times" or "the feeling you have when your foot falls asleep and is moved again - yeah, I feel that 24/7 but it gets even worse after I eat."

But I do think you should just find a new doctor. I can understand this one being distracted or having an off day. But I am upset on your behalf that he skirted around the main reason you were there. I find that disrespectful of him, no matter what had happened to him recently.

I have had a few say to me "this must cause depression" and I say "It sure does. That's why I need to fix my health issue." Personally, I don't have time for even the appointments I'm going to. I go online to medhelp_org and post there when I need to vent about how much my life is limited by this. But, mainly, I keep my spirits up by trying to self-diagnose and see what I can do to change my situation.

[blueberry.muffin]

I'm on rotations as a medical student, so I am not a doctor but am training to become one and have worked with quite a few as this point. There are some very interesting points I've seen raised in this thread and I wanted to comment on a few:

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.

This is not necessarily true and I would recommend that the OP view this advice with caution.

Do not be afraid to cry or show frustration.  That's what finally got my doctor motivated to try something that helped me.  Some docs must think that people who can remain calm while in pain aren't really in pain.

This is not necessarily true and I would recommend that the OP view this advice with caution.

Once someone has been in pain long enough, there is almost always psychological consequences, which makes it hard to tell which caused which.

Also, it's amazing how many disorders there are that they can't test for. The best indicator of my condition, is that narcotics don't work. But, that's also an indicator that someone is drug seeking. It's not that there isn't something physical to treat, it's that we don't have tests that can register many physical problems.

This is fantastic advice. Thank you. I'll add that some tests are very, very expensive and aren't necessarily covered by insurance, so unless there's a multitude of things pointing to a disorder doctors are going to be cautious about what they recommend.

One more thing to note - how you present yourself to the doctor is important. If, for example, you are a chain smoker to the point that we can smell the smoke on your clothes from outside the room with the door closed, and you want to talk about your breathing issues, it's difficult to take you seriously because you're actively demonstrating that you don't take your own health seriously.

Or, if you hop up on the table with a smile on your face and tell us your back pain is rated as an 8/10, it's hard for us to take you seriously because that just doesn't add up.

Does this matter? Absolutely. If we try to treat a disorder that we can't fully confirm and that doesn't seem to be as serious as the patient suggests, we can do MORE harm to the patient based on side effects. We're going to want to make sure the medical diagnosis is sound, first. And unfortunately, we do not have anywhere near as much time as Dr. House. He has days to work on a single patient. We may get fifty patients in one day… if we're lucky.

[emwithme]

I'm on rotations as a medical student, so I am not a doctor but am training to become one and have worked with quite a few as this point. There are some very interesting points I've seen raised in this thread and I wanted to comment on a few:

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.

This is not necessarily true and I would recommend that the OP view this advice with caution.

Do not be afraid to cry or show frustration.  That's what finally got my doctor motivated to try something that helped me.  Some docs must think that people who can remain calm while in pain aren't really in pain.

This is not necessarily true and I would recommend that the OP view this advice with caution.

Once someone has been in pain long enough, there is almost always psychological consequences, which makes it hard to tell which caused which.

Also, it's amazing how many disorders there are that they can't test for. The best indicator of my condition, is that narcotics don't work. But, that's also an indicator that someone is drug seeking. It's not that there isn't something physical to treat, it's that we don't have tests that can register many physical problems.

This is fantastic advice. Thank you. I'll add that some tests are very, very expensive and aren't necessarily covered by insurance, so unless there's a multitude of things pointing to a disorder doctors are going to be cautious about what they recommend.

One more thing to note - how you present yourself to the doctor is important. If, for example, you are a chain smoker to the point that we can smell the smoke on your clothes from outside the room with the door closed, and you want to talk about your breathing issues, it's difficult to take you seriously because you're actively demonstrating that you don't take your own health seriously.

Or, if you hop up on the table with a smile on your face and tell us your back pain is rated as an 8/10, it's hard for us to take you seriously because that just doesn't add up.

Does this matter? Absolutely. If we try to treat a disorder that we can't fully confirm and that doesn't seem to be as serious as the patient suggests, we can do MORE harm to the patient based on side effects. We're going to want to make sure the medical diagnosis is sound, first. And unfortunately, we do not have anywhere near as much time as Dr. House. He has days to work on a single patient. We may get fifty patients in one day… if we're lucky.

Hopefully I haven't messed up the quote tree - but I wanted to comment on those points that I have emboldened.

I have ME, fibromyalgia, possibly Ehlers-Danlos Syndrome (type 3).  I'm in pretty much constant pain, which - even with LOTS of strong painkillers - rarely goes below a 5/10, and often peaks at 8 - 9/10 (I often wonder whether going to the ER will help and then decide against it because of the stress it would cause me and effort it would use - I'm in the UK so (fortunately) cost doesn't come into it).

I have been through a course of CBT (cognitive behavioural therapy), specifically designed for people with ME/CFS etc, and try to keep a positive mental outlook.  There are many times when my "exterior self" is smiling (although my eyes may not be) when my "interior self" just wants to curl up in a ball and/or throw a tantrum like a toddler.  I try to remain calm, because crying and becoming emotional really tires me out.  Tiredness is not only physical, and being emotional drains my batteries like nothing else. 

I also appreciate that other people don't want to know the truth about how I am.  If people ask "how are you?" they don't want to know that I haven't slept more than three hours at a time, that every joint in my body is screaming in pain, that I'm scared of falling over, and that I wish it was two hours later so I could take some more painkillers.   They are simply exchanging pleasantries.

So please, if someone is calm, relatively coherent and (darn it, what's the verbal equivalent of literate - that) -sorry, brain fog, please don't assume they're drug seeking.  You aren't able to see where we were *before* (A case in point - I can type at about 50 wpm with 95% accuracy.  Some people think that's great.  Until I tell them that five years ago I was typing at 120 wpm with 100% accuracy.  Until you have the baseline, please don't jump to conclusions).

[blueberry.muffin]

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

[TurtleDove]

blueberry.muffin, that was great!  My sister and her husband are both doctors and they would agree with your comments.