Help me navigate an appt with a new doc
July 17, 2014 7:47 PM   Subscribe

I finally got health insurance after not having it for years. The problem is that it is my states crappy version of medicaid even though they won't admit it. It has already been a clusterfuck. Only 3 docs in my county accept this insurance. I have my first appt tomorrow and could use some advice on how to proceed.

I need to convey to the doc (who is actually an intern at a local community center) how much pain I have been in and how it has negatively impacted my life. I know I need surgeries due to past history. I want MRI's. My previous surgeries are failing and I suffer from multiple dislocations in my feet, thumbs, shoulders and hips. But docs still want to classify me as having Fibro.

How can I make myself heard and also not come off as a pill seeker? I am going to completely lose my shit tomorrow if this doctor brushes me off! You would think that my surgical history would get their attention but it doesn't. I want to get back to being employed and productive. I feel so defeated. The feisty self-advocate in me is almost gone.

What I want from this doc is pain control and a plan of action. Can you guys help me with a game plan?
posted by futz to Health & Fitness (19 answers total)
Response by poster: I should add that I am prescribed 4 hydrocodone a day and that barely touches the pain. I can barely do anything for myself. Other people do my shopping, housework and yard work for me.
posted by futz at 7:59 PM on July 17, 2014

I think you've already started to explain things quite well here actually! You sound very self-aware in your first main paragraph; perhaps making what you wrote here into a script and taking it from there? I'd certainly practice saying it out loud and working on tone, too. Admittedly, I'm neither a medical professional nor someone who has chronic pain, so others who understand better can help you with specifics. However, it sounds like you're on the right path.
posted by smorgasbord at 8:10 PM on July 17, 2014

I recommend asking for a referral to a pain specialist. This is my opinion as a doctor who sees a lot of people with chronic pain, but escalating doses of narcotics for chronic pain is no way to live, and it's a bad road. I'd recommend looking for any other viable solution to your problem aside from that. Get on a pain medication contract.

I suggest not going in with an attitude that "I know I need surgeries and I want MRIs." Most doctors won't take kindly to being told what they need to operate on and what they need to order MRIs on. Surgery is not benign and MRIs are not cheap (nor are they necessary as often as people think they are - not saying you don't need one, but consider the possibility that you might not need one or might not need one right at this moment). Not sure what you think you need surgery on or MRIs on, but consider asking for a referral to orthopedics. Talk to an orthopedist about the risks and benefits of surgery and options for workup including MRIs. I believe you will help your case if you are able to have a discussion about risks and benefits and options, rather than a discussion where you appear to be ordering your doctor to order tests or surgeries. You might 100% need surgeries and MRIs but your doctor may only have 5-10 minutes to spend with you and if you waste time arguing, that's less time you can spend on constructive conversation. Aim for advocating for yourself but not being adversarial. I can assure you you will catch more flies with honey than by losing your shit. Try not to do that, especially if losing your shit means threatening to report your doctor to boards of health or sue them. There are times when that may be legitimately deserved but I would recommend trying hard not to do this unless you definitely want to be flagged as having drug seeking behavior - keeping in mind that being overly friendly towards a doctor i.e. "you're the best doctor ever." while trying to get pain meds is another red flag. I've seen people beg me about how they want to get back to work and be productive and they suckered me into giving them more narcotics, and I literally saw them come in a few hours later as a narcotic overdose using the prescription I gave them. It makes you feel sick when something like that happens (meaning as a doctor). I'm telling you this to illustrate how doctors can get so cynical/jaded about chronic pain patients and narcotics. The easiest way to not come off as a pill seeker is to seem like you are truly open to solutions other than pills.

Expect not to get everything you want done in your first appointment. Your doctor may have only 5-10 minutes to spend with you. You are a Medicaid patient, and they are losing money when they see you.
posted by treehorn+bunny at 8:25 PM on July 17, 2014 [9 favorites]

Focusing on the pain you are experiencing and the impact it is having on your life will be key. Be able to clearly explain the surgeries you have had, using the correct medical names if possible. Explain your symptoms clearly, try not to be too emotional, and express that you want to work on a plan to regain function.

Saying things like, "I want MRIs" may make it more difficult to be heard, as you are demanding very expensive medical tests without (from the doctor's perspective) the expertise to know whether they are appropriate. Similarly, rather than saying, "I have dislocations in x, y, and z places", say something like "I believe I may have dislocations in x, y, and z places due to a, b, and c symptoms and my experience in the past that led to 123 surgery." You're still advocating for yourself, but you're leaving some (appropriate) space for the physician to draw her conclusions.

Good luck!
posted by jeoc at 8:34 PM on July 17, 2014 [2 favorites]

Response by poster: Thanks for shattering all my hopes treehorn.

I have been down this road over and over again and it has always ended in surgery no matter how many docs I had to wade through to get an actual accurate diagnosis.

Really heartening that because I am a medicaid patient I may only get 5 or 10 minutes of your precious time. See what I am up against? I give up. Thanks for confirming that it was stupid of me to ever hope for a different outcome.
posted by futz at 8:44 PM on July 17, 2014

I think treehorn+bunny gave you excellent advice with the best intentions behind it -- helping you maximize the appointment to get the best care possible rather than minimizing your suffering or doubting your symptoms. You had asked for people's advice but are free to take it or leave it, of course.

I would try really, really hard to go to the appointment with an open mind and without the negative attitude as it was a complete 180 from your initial post and very off-putting. I know you have dealt with so much frustration over treatment in your past and that's unfortunate and unfair to you. However, while understandable, it's also unfair for you to immediately project it upon your next doctor and ultimately harmful for getting what you want, which is improved care. Therefore, going in assuming the physician is your ally as well as making a script in advance and really minding your tone will probably be most beneficial. Regardless of how long the appointment will be, I am fully confident that your doctor -- like treehorn+bunny -- genuinely wants to help you as much as possible. I wish you luck because you deserve quality care.
posted by smorgasbord at 8:54 PM on July 17, 2014 [4 favorites]

Hi futz, please don't give up hope just yet! We want to help you and I think most people who respond will try to give you good advice.

I am currently on Medicaid, too, after having spotty health insurance for a few years. I have an ongoing chronic fatigue-like problem and some other major issues that cause me frequent pain or discomfort. I was really nervous about my first appointment because it was my first chance in a long time to get actual concrete help

What helped me the most was to do some research prior to the appointment and to make a list of every single issue that I wanted to have addressed. I looked up reviews for my new doctor on sites like to see what other patients said about helped me feel prepared for what attitude I might need to adopt to advocate for myself.

Next, I printed 2 copies listing all of the issues I'd been having. When I got to the appointment, I gave one list to my doctor and used the other one to discuss issues. I still had to argue a bit for a few things, and felt like I had to speed-talk a bit to get through it all, but the end result was that I had referrals to 3 specialists by the end of the appointment. I also asked for medical records request forms and got those sent out to my old doctors by the end of the month.

Be honest with the doc and describe your daily level of pain on a 1-10 scale, how much it affects your Activities of Daily Living, frequency and duration, etc., that you've had previous dislocations, and go from there.

My version of Medicaid also has a program for special needs members where you can request a representative aka Health Coach. I think they will go to your appointments with you and help advocate for you. Might be something to check out after your initial appointment. Good luck!
posted by cardinality at 9:27 PM on July 17, 2014 [1 favorite]

Response by poster: How many times am I supposed to be polite and regulate my tone with doctors? I have tried that over and over again. I have never requested an xray or mri. nor am I going to with this doctor/deity who apparently can decide that if my tone is inappropriate or disrespectful that I don't deserve medical care. I have done everything treehorn said. At what point am I allowed to get mad and angry and let it show???
posted by futz at 9:28 PM on July 17, 2014

Best answer: You might try a completely different tack all together - just lay it all out on the table, your concerns, your goals, etc, in the way that makes you as vulnerable as possible.

"Hi. I'm really nervous about this appointment because I feel like I've had all these surgeries and MRIs and they haven't helped, and I'm on all these drugs that I don't want to be on that don't help. I'm open to anything. It's really frustrating, and makes me really angry. I've felt like other doctors I've seen haven't taken me seriously. What can I do? Referral to an orthopedist? A psychiatrist? I'll try anything. I just want to make this pain go away."
posted by colin_l at 9:34 PM on July 17, 2014 [11 favorites]

Best answer: Per your latest post, I think colin_l's approach could be the best way to go then, if you'd feel comfortable trying that. You are totally "allowed" to get mad and angry and let it show: the key is doing so in a way that is empowering versus harmful, either to yourself or the others involved. colin_l's script does this well in that it shows your anger is due to your past experiences, not directed at this new doctor, and that while you have tried a lot, you also are truly open to hearing what they have to say and suggest. It sets it up so you two are a team together rather than adversaries; it's not about kowtowing to people but demonstrating through your words that you are going to treat them with respect (and expect it in return!!)
posted by smorgasbord at 9:49 PM on July 17, 2014 [3 favorites]

I know how you feel. I just had a very disappointing appointment with a specialist that I am transferring too. I have enjoyed eight months of not discussing what my diagnosis is - to being thrown back into - I am not sure what is wrong with you. After having a crying fit and apologizing to the Doctor for getting so mad, and spending the rest of the day wallowing a bit, I realized that as much as it pisses me off and costs me money (medicare,large copays) each of them has to come to their own conclusions about what the diagnosis is. Even though I look like a duck, respond to treatment like a duck and am progressing like a duck, I don't clinically present like a duck, and that throws them. They have to go thru their own elimination process and then they settle down. I then get to go on with my life asking them for help when I need it. I knew all of this before my latest appointment but forgot and got caught off guard.

I personally try to have the attitude of I have problem x. I need help. How can you help me. I stay away from using demanding language and medical jargon.

You will not get all the help you need in one appointment but you know that if you have been through this before. Give them a chance to be a good Doc. Sometimes it takes a few visits to establish a good relationship. Don't jump ship to soon.

My new Doc was not unkind they just didn't tell me what I wanted to hear. They are committed to help me though and I will stay the course. The MRI's start in two weeks. The bills six weeks later.
posted by cairnoflore at 11:14 PM on July 17, 2014

Also, a few things.

Doctors are people too. Just like in your job, if someone comes in and is a jerk, you feel less like helping them, right? Remember that they went to school and training for 10 years or so to learn what they're doing.

And yes, specialists can be a "I've got a hammer, so everything's a nail" kind of situation. As an example, my doctor referred me to an ENT for exhaustion and snoring. He order a CT scan of my sinuses. It came back with some minor indications. I did some treatments that worked some but didn't want surgery. At a follow up with my primary care, she did a blood test and found some abnormalities. So she sent me to an endocrinologist who had a suspicion and got an MRI of my brain. Turns out that I have a pituitary adenoma. And it turns out that you could see it on that CT scan from a year ago. But the specialist was only looking at his slice of things and ignored it. So, I'm finally getting treatment and hoping to feel better soon.

Also, there is increasing evidence that opioids don't work for long term pain management and only really serve to addict people. They also cause a pain rebound effect where you're sensitized much more to the pain than you would be if you weren't on them. They're only really indicated for cancer pain.

Have you tried injections or acupuncture?

There are other pain management techniques that you should ask your doctor about.

Also, an MRI is a diagnostic tool, like an X-ray. It's not a treatment in and of itself.
posted by reddot at 5:01 AM on July 18, 2014 [1 favorite]

I have a lot of conditions and I spend a fair amount of time doing my own diagnosis. Does it irritate some doctors, only the bad ones, but you need to be respectful and be open to their ideas as to how to treat you. Good luck!
posted by OhSusannah at 7:31 AM on July 18, 2014

BTW, maybe this is not totally on subject but if you are unable to be employed are you able to qualify for Social Security which then qualifies you for Medicare which is much more universally accepted?
posted by OhSusannah at 7:32 AM on July 18, 2014

Write everything down beforehand. Symptoms, date of onset, types of surgeries, dates of surgeries, doctors names, prescriptions with dosages, etc. It'd probably be useful for you to type it up and keep an electronic copy and print out a new copy to give to each new doctor.

Also bring paper and pen, and write everything down. Repeat it back to the doctor to confirm your understanding.
posted by radioamy at 10:18 AM on July 18, 2014

The short appointments are for everyone, not just Medicaid patients. It means nothing about your value as a person, it's just how the business has to be structured so that medical practices can subsist economically. It's a broken system. I hope you'll get more time (sometimes new patient appointments are longer), but I do think you should be prepared that it might not be as long as you'd like to be able to discuss many different issues.

You are a Medicaid patient, and they are losing money when they see you.
This is a horrifying attitude for a doctor who is on salary and I certainly have not found it to be true of the doctors I've seen while on medicaid.

It's not an attitude - it's just reality, and that's why so many doctors don't take Medicaid patients. You can only lose money on so many patients before you can't keep your doors open anymore. That's part of the reason I'm in emergency medicine and not primary care, I don't have to worry about which of my patients can pay or who has what insurance. I treat everyone the same, and never turn anyone away. I'd prefer that we had a system of socialized healthcare, personally. It upsets me that so many of my patients have to come to the emergency department for primary care needs.

How many times am I supposed to be polite and regulate my tone with doctors? I have tried that over and over again. I have never requested an xray or mri. nor am I going to with this doctor/deity who apparently can decide that if my tone is inappropriate or disrespectful that I don't deserve medical care.

You're seeing this physician for the first time. What I'm saying is that it doesn't make sense to take out your anger at the medical establishment on someone you haven't ever met before. What happened in the past may have been wrong, but it won't have been this doctor's fault. You can be angry, and maybe you should be angry, but don't be angry AT THIS DOCTOR unless he has personally done something to wrong you. Doctors are often just as angry at the inequities and challenges of the healthcare system as a whole as the patients are. I think colin_l's recommended approach is a good one.

I'd like to say that doctors give everyone the exact same medical care regardless of how rude, disrespectful, angry, etc those people are. I certainly try to do so, particularly because I take care of a larger proportion of homeless people/drug abusers/prisoners (i.e. rapists, child abusers, etc) and 'pill seekers' than most doctors do. It does become very difficult to have a productive conversation with someone who is screaming mad at you, though, and I definitely wouldn't say it makes it more likely that you will get what you want (note that what you WANT may not be what the doctor thinks is in your best interests or is necessary - whether you get the medical care you want is an entirely different question than whether you get the medical care you NEED, and my answer was directed at the former since it seemed to be what you were asking about). I did not mean to be discouraging, I certainly don't see any reason to lose hope at this point, and I personally hope that you end up pleased with the care you receive!
posted by treehorn+bunny at 11:54 AM on July 18, 2014 [5 favorites]

It may be worth mentioning that not all doctors are able, on account of paperwork and other reasons beyond their control, able to live up to the scientific and patient-care standards they'd like.

Here are two anecdotes. I'll precede both with the fact that my insurance situation is just about as opposite to OP futz's as can be: I work in a management capacity for a profitable tech firm, and my insurance situation is about as generous and accommodating as they come.

Anecdote one is the ingrown toenail. I called the family practice clinic for my insurance and area, and was (I thought) very clear on the phone that I had an ingrown toenail I wanted taken care of, and that I'd had these dealt with rather trivially both at other GPs' offices and at my former college's nurse's station. I told the lady on the phone, as clearly as I thought I could, that I wanted to come in, have the toenail dealt with, and hobble on out the door. When I came to the appointment, the physician took a look at it, said "I can refer you to a podiatrist," and that was that. When I told him about how I'd specifically requested when setting up the appointment that I wanted to just get the thing sliced off and done with, he was incredulous. "I don't have time to do that!". That was the last time I set foot in that office.

Anecdote number two is the Celiac second opinion. A GI I'd been seeing had diagnosed me with Celiac disease. For a number of reasons, I was dubious about the diagnosis. I called another GI on my insurance, and told his staff "I've got a diagnosis from anther GI and I'd like a second opinion on it." They asked me to have all the relevant records faxed over. I protested that sending all the records defeated the purposes of getting an independent second opinion, and I hit a stone wall. They were unwilling to work with me unless I had the records sent over. This seems like a basic scientific method thing to me.

I guess my point is the physicians are constrained by all manner of factors - by policies dictated to them by the insurance companies, by the skill and quality of their office staff, by their own scheduling acumen, by the degree to which they've become jaded with the populations they server, etc.

They're humans too, and are subject to all the same unconscious biases and flawed thinking as the rest of us.

It sounds like your options are very limited by my Medicaid, and even if you qualify for Medicare, you may find you're still similarly limited. But within those limits, it's likely worth taking the time to try to find the doctor (or office -- excellent front-desk staff can often compensate for lackluster physicians) that's able to work with you.

Best of luck!

(Additionally, my mentioning psychiatry in my previous answer was intentional. While it may not directly relate to your symptoms, if it's covered by your insurance, you may find a head doctor more open to a variety of treatment options or referrals, or just having a very fresh take on your situation.)

Again, good luck!
posted by colin_l at 1:49 AM on July 19, 2014

I have multiple chronic pain conditions that co-exist rather unpeacefully. The last time I had to seek a new primary care physician (for an acutal "I am ill" thing, not my usual aches and pains), I was a self-paying patient with no insurance. To make sure I was able to be clear and concise, and didn' tmiss anything important, I typed everything up journal-entry-esque. On a separate page, I listed both the generic and brand names of all the meds I was taking, and the doses (with prescription pad abbreviations).

My new doc couldn't stop talking about how wonderful it was that I'd done that for her. She appreciated it for both its clarity and completeness, and said she wished more patients would do the same thing.

When I had a recent New! Exciting! pain crop up, I grabbed a small spiral bound notebook. Every doctor was documented. Every ER. Every drug, every test, every differential diagnosis, every theory, everything. Doctor #12 found drug cocktail #6 after 7 tests and 3 specialists ruled out everything else it couldn't be. I was unable to type up my notes, but I filled out Dr. 12's intake paperwork from that notebook, and then rattled off the same information to him when sitting in his exam room. He told me I should go to medical school.

Keep in mind, specialists can be wrong sometimes. I had an orthopedist tell me when I was 13 that I'd likely need both knees replaced by the time I was 30. I was told by a different ortho at 24 that he had no idea what the first ortho was talking about, a little physical therapy to make sure I knew how to strengthen the surrounding muscles, and I'd be in good shape. So someone who may have, in the past, told you that you needed surgery on XYZ, may have been mistaken, or there may be newer, better things that can be done less invasively.

Good luck!
posted by The Almighty Mommy Goddess at 4:00 PM on July 19, 2014 [1 favorite]

Response by poster: The doc that I saw was so awesome that still makes me cry. She listened! I have since seen an awesome ortho who took me seriously and I am scheduled for an mri and an appt with a geneticist. I have cried for the last 3 days mostly from relief. If anyone is in the market for used toilet paper snot rags pm me.

I am hopeful for the first time in ages.
posted by futz at 10:27 PM on August 17, 2014 [2 favorites]

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