When trying to get diagnosed, you are often told your next step is seeing a specialist.

 This is an indicator that your primary care physician can’t easily figure out what’s going on, and wants you to see a doctor who focuses on whatever system of yours seems out of whack.

It’s not an indicator of horrible things, necessarily, it simply is the common next step in either being properly diagnosed(learning what condition you have) or to make sure you are getting the best possible treatment for your condition.  

Some specialists are very good, patient, knowledgeable, and open to learning new things.  Other specialists aren’t. Some specialists are really good at diagnosing a problem, and figuring out what’s happening, and why.  Others can’t be bothered to think it through.

The really unfortunate thing is that it is practically impossible to know how good a specialist is until you actually go in and see them.  The American healthcare system is broken and makes finding the right specialist, correct treatment, and solid support a big challenge.

This means even though we do not have full(or sometimes much) control over who we see, how they help us, or what the test results may be, it is in our best interest to make sure that we are helped as much as possible each time we go to see any medical professional.  In other words, it’s best to be prepared for the visit.

How do we do this?  It sounds pretty daunting, I know.  It can be done though, and here are some steps to do it.

Step 1: Be prepared to wait

Some specialists are very overbooked, so it can literally take months to get on their schedule.  I had to wait about 9 months to see my current neurologist, which I think is the longest I’ve ever had to wait.  When Al was told that he had osteoporosis, our next step was to see an endocrinologist.

We called the one his surgeon recommended in mid-August and were told that they were booking people in for early January.  

Try to approach the wait for your specialist mindfully. The calmer you are, the easier the wait will be on you.

Sometimes the long wait is a sign of how good they are, or how high the demand for their profession is.  Don’t let the wait frighten you off, especially if you’re dealing with finding a diagnosis or know you have a rare condition.  

The really good experts are often worth waiting for, even when it does feel like it will take an insanely long time.

My current neurologist is an expert in my condition, FND, and runs a multi-week intensive treatment program.  

Once I had my first appointment, there was a lot more flexibility with scheduling, and my second appointment was a month later.  

Often the main wait is for that first appointment, and after that, the scheduling gets much easier as a returning patient.

Step 2: Make sure they have all your information ahead of time

Since you might have a crazy long wait, it’s really important to make sure that when you do go in to see that professional, they have every possible useful piece of information at their disposal, so they are more likely to be able to help you.  

When calling for the first appointment with a new doctor, ask if there is any information the doctor needs, and how to get that information to them. Often, besides the phone number you used to reach them, there is an address and a fax number.  Some information can be very lengthy, so they can ask you to mail or drop off your information.

Blood tests often give your specialist useful information – better to do it before you see them, then need to wait for the follow-up if you can!

Also, ask if there are any tests the specialist wants to prescribe to you before you see them.  

Some offices do this, and others don’t, but if you can get testing done ahead of time, there are more pieces of information for your doctor to analyze, which might lead to a faster diagnosis, or ruling out possible conditions.

You can also ask if there is a specific person in the office to send your information to.  Sometimes you address things to the doctor, but at other times they have a staff member responsible for gathering the information.  

In a big office, it’s really easy for your information to get lost, so make sure you know.  If possible, get the name of the person who took your call as well, just in case there’s a communication problem later.

Gather the information you have from previous appointments and tests, and make sure it gets sent to their office well before your appointment.  

Follow up

You also want to check with that office at least a week before the appointment to make sure that they did indeed receive all your information. Recently, when I was helping Al with this process, one specialist’s office told me that the information I had sent them wasn’t there.

After some discussion, it turned out that she had been looking at the date a test copy was made and had assumed it was the date the test had been done.  Since it did not line up with the rest of his records, she thought we hadn’t sent her the correct information.

If I hadn’t made that confirmation call, it was possible that Al’s bone scans would not have been available to the doctor when he saw her.  Seeing those scans was a prerequisite for the appointment.

So even though we shouldn’t have to make specialists, offices, and insurance companies do their jobs, it is generally us, as patients, who pay the price if the specialist doesn’t have the right information when it’s needed.

Step 3: Gathering information for the appointment

Many specialists also send out personal history forms ahead of time. These forms can be pages long, and ask about many aspects of you and your family’s life histories.  It’s a lot of information, and often easier and much less stressful to fill out when you are at home, rather than waiting in the office to see the doctor.  You usually bring this history in on the day of your appointment, though double-check on that with your doctor’s office.

Do your own research if you have a probable diagnosis

woman searching book shelves
Do your research if you know what you have! The better you understand your condition, the better questions you can ask the doctor

While waiting to see the doctor, do any research you can to be prepared for the appointment.  If you have a diagnosis, read up on it.

Learn what the tests, treatments, and symptoms are.  

See if it lines up with what you are experiencing.  If it does, see if you have any questions about your case or the condition in general to ask the doctor.  

Write those questions down.  

I know you think you might remember them when you go in, but it’s very very easy to forget that one little detail or to get thrown off by something at the appointment and be too distracted to ask.  Your best bet is to write down your list of questions and bring them to the appointment.

Do not research conditions if you don’t have a diagnosis

If you do not have a diagnosis, do NOT go searching online through any symptom checkers.  

It’s going to increase your stress level, and get you worried about all the things that could be going wrong.  The sheer number of ways our bodies can fail to work correctly is amazing and terrifying. 

Don’t torture yourself, you already have enough on your plate!  Please, please, please don’t put the cart before the horse and blindly explore your symptoms.  

I’ve fallen into that trap once or twice, and it’s really easy to start thinking your mild heartburn is actually stomach cancer!  

If your shot in the dark is wrong(and it likely is) you will have worried yourself over nothing, and given yourself a lot of unnecessary stress.

If somehow you are right, you’re going to have a long process ahead, and need to conserve your energy – until you have a likely cause of your symptoms, researching for a specific condition is going to be counterproductive.  

The only exception would be if your doctor gave you two or three highly likely possibilities, you may be able to find some good resources to help you better understand your possibilities.  Even then, use caution because increasing your stress is only going to make things worse

Try to keep track of your symptoms

What you can do is track your symptoms – take notes about how you feel and what you experience.

 If you notice any patterns, write them down. This information can help your doctor with your diagnosis, or with providing you with the best treatments.  

If the recording process gets you feeling more stressed or upset, you don’t need to do it, but the process of being more aware of your symptoms can give you some insights, and help you have a sense of control.

Create a medication list

Make sure you have information about all the medication or supplements you take.  Create a list of what you take, when you take it, how large the dosage is(how many mg), and the brand(I sometimes take pictures of the supplements I’m taking, including the dosage and ingredients list).  

Most doctors ask for this when you go in, and having accurate information will help your specialist better understand your current treatments and be able to prescribe you the correct medication(some medications interact poorly).  

Even if you don’t take medication, sometimes vitamins or other regular habits of yours might be helpful in your diagnosis.  

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Step 4: Confirm your appointment ahead of time

If you don’t hear from their office by the morning before your appointment, you need to pick up that phone and call the office again!

Most offices call and confirm your appointment the day or so before, occasionally as much as a week before. 

If you don’t get that confirmation call, you might want to call their office and confirm the day and time of your appointment.  

It’s not likely to be wrong, but mistakes happen(yours or theirs) and it’s a lot better to confirm that you are aiming to get there at the right time than to show up and learn that you missed your appointment!  

This is your last chance to confirm that they have any information they were supposed to receive (remember it’s better to be positive than to find out they don’t have the information when at the appointment).

 You also should ask if there’s anything they need you to bring to the appointment.  

Normally, places want you to bring ID and your insurance card(or cards), but occasionally there are additional requirements.  

Some offices also send a detailed history report to your home ahead of time. If they do that, make sure you received it and filled it in completely.  

Double-check with them on the confirmation call if you did not receive a medical history request.

Also double-check if they want you to come in early – a lot of times as a new patient, they want you to come in about 15 minutes early so you can get the additional information filled out before you actually see the doctor. 

When Al sees his surgeon, he is told to arrive a half-hour before his appointment is actually scheduled in order to get an X-ray taken before he actually sees the doctor.  

Step 5: Find supportive company for your appointment

Step 6: Prepare the night before

Packing your bag before you go to bed helps you make sure you don’t forget anything!

The night before your appointment, have everything you need laid out or packed up ahead of time.  

Include a notebook or notepad, and a pen or pencil to write with. This is so you can record any information the doctor has for you. 

For some people, their phone’s note-keeping function may work, but I have found it distracting and cumbersome at an appointment, with things just taking that extra moment to load.

Make sure that you have your medication list, your prescription(if a referral), your list of questions, and any paperwork they asked you to bring in(like your health history if they mailed it).  

Also, bring a little something to distract yourself while waiting.

This might be having your phone fully charged with a game on it, or a book to read – anything that can help you relax a little if you end up having a wait at the office.

Also know how you are getting there, how long the trip will take, and make sure you have plenty of time set aside in case the doctor runs late.  You should know that everything is set up and be confident you are ready to get to the office and to talk to the doctor.

If the appointment is early in the day, make sure your alarm clock is set and your travel plans have allowed for traffic.

Example

Al and I have often needed to go to Manhattan for doctors appointments.  

The best way to go there is by train, so we need to build in time to park the car at the train station, pay for the parking, buy the train tickets, catch the train, ride it for over an hour, then catch the correct subway to be able to walk to the office.  

We plan a bit of cushion time for each step, so we will not be late to the appointment. We usually plan so that if everything runs smoothly, we are at least 20 minutes early to the appointment, since many offices have additional paperwork for you to fill out when you get into the office(especially on your first appointment). 

If he has an appointment at noon, for example, we’ll leave the house around 9 AM to arrive at the train station with plenty of time to park and catch a train around 9:30.  That would get us in a little before 11, so we have plenty of time to walk a couple of blocks to catch the subway up, then walk over to the doctor’s office.  We also allow plenty of time for that walking, since Al is using a cane and isn’t running anytime soon.  

When we get there, often about 20 minutes early, we aren’t rushing and are in the best possible mental state to handle whatever happens at the appointment.  Sometimes this does leave us sitting in the waiting room close to an hour, but that’s much better than missing the appointment!

Step 7: At the specialist’s office

Your blood pressure, height and weight are often taken at the appointment

Most offices have a staff member to check in with when you walk in.

Let them know you are there and provide them with any information they ask for.  

Fill out any paperwork they have.

You can ask if they want your medication list or if you need to hold it for the doctor.

Sometimes you are brought directly to the office where you are meeting the specialist and sometimes you get a short exam by a nurse on staff.  

They will often check your heart rate and maybe one or two other things. After that, if it hasn’t been done already, they often will enter your medication information onto the record.

By having it written ahead of time, you don’t need to worry as much about remembering and can just hand the list over.

Finally seeing the specialist

When you are in the appointment, make sure the doctor saw all the right information.  Give them as detailed answers as possible to their questions.

Do not understate or overstate your symptoms, and do your best to describe things as thoroughly as you can.

 If you are dealing with pain, you are likely to be asked where the pain is, how frequently it occurs, and for a description of the pain(sharp or dull, constant or varied).

They might have questions about your diet, or your sleeping habits.  

Whatever their questions are, it’s much more important to be honest than it is to sound good. If you haven’t been exercising or keeping up with any tasks assigned to you, or have been having trouble sleeping, be honest and let them know. 

Just be prepared to tell them the truth, even if it is embarrassing or you feel like you’re complaining.

The specialist needs to have a full picture of your health situation, and even if something seems unrelated to what they are asking about, they do have a reason, and answering honestly might be the key to finding out what you have.  Have your list of questions and symptoms ready to refer to as needed.

Step 8: Don’t let the doctor leave until you know your next move!

Do not let the specialist leave until you know what your next steps are!

Before the doctor leaves the room, make sure you understand what they have told you.  

If they have a diagnosis, make sure you know what it is(including how to spell it), and the next steps for treatment.

Sometimes you go back to that doctor (a follow-up appointment), other times, there’s a different type of specialist to see, or a different doctor to handle the treatments.  

Ask questions and write things down.

Don’t stop until you understand or know how to find more information. There are often websites and discussion groups around certain diagnoses. Some are better than others.

Ideally, the doctor can tell you a site that has particularly high-quality information.  If the condition is pretty common though, there are likely a lot of resources out there that a good web search or two will find.

Be sure you have the name of the condition written down and spelled correctly so you can look it up with confidence when you get home.

If they still don’t know what’s wrong

If they do not have a diagnosis, you need to focus on next steps.  Make sure they tell you how you can find out what is wrong. There might be tests to perform, or information to gather, or a different type of doctor to see.  

Make sure they have written the right prescriptions if there is medication or testing involved.

Before the doctor leaves, make sure you know what the plan is!

Make sure you have a timeline for the next appointment(see me in a month, or come back in two weeks – some kind of firm timeline), or what kind of specialist you should go to next(You should see an endocrinologist or a doctor of physical therapy).  

Double-check if necessary.

You should walk out of that appointment with notes on your next steps and a plan of what you need to do next. Even if you don’t remember the details of your conversation, you will have your notes to refer to.

Step 9: Following up

With all of that complete, follow through on the instructions.  

If you felt that the doctor attended to your needs and understood your situation, they are likely worth going back to.  

If they were dismissive or disrespectful or seemed unable to help, it might be time to get a second opinion or find a better doctor.  

You should ideally feel confident that the doctor knows what he or she is doing and that they helped you, even if they could not find the cause of your condition in the first appointment.  

Conclusion: Seeing a specialist

Part of taking care of yourself is making sure you get the right treatment.  If you need to see a specialist, make sure you make the appointment and follow through!  

The more information you have from previous appointments, the more important it is to get all of that information to your specialist ahead of time so that they don’t end up repeating work that’s already been done.

If you can, bringing a loved one with you to the appointment can really bolster your self-esteem and help make sure you get all of the details you need and get all of your questions asked.  

Be sure that you have all the information the office needs to be sent to them, and double-check that they actually received the information.  

To be in the best possible state of mind at the appointment, ready to handle whatever happens, be sure that you have everything you need gathered and packed before you go to bed the night before.  

Also be sure that you know where you’re going, how long it will take to get there, and are able to get there with time to spare.

Make sure you are prepared to be asked about all the medications you’re taking, and possibly some history of medications you have taken in the past.  

When you finally get in and talk to the doctor, make sure you understand what the doctor tells you, and that you know what your next steps are.

This is often the next step for diagnosis and treatment after talking to your Primary Care Physician, and it’s very important for your health that you find out exactly what is going on in your body.  

You got this!

What I’ve shared today is the way to make sure that you get the most information from your specialist when you go in, even if they are not such a great doctor, or if you don’t like them.

You can only do as much as you can. The most important step is to make the appointment, the second is to show up to it!

All the rest is secondary.  

I know that you’ll have an informative visit with your specialist, and I hope that you get the best news possible!

Never forget that you deserve to be treated well and to be seen by a doctor who understands your condition well, and can guide you towards the best possible care you can get. I believe in you.  No matter what, you can do this!

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4 Comments

  1. So many important points here Alison – especially about being well prepared and not being disheartened about having to wait many months for your appointment.

    Sometimes, if I see that I need to wait a few months, if possible I see another doctor who specialises the same and may not be as busy to just experience what I could expect when I see the doctor I really want to – it allows me to go pre-prepared with certain tests that I otherwise wouldn’t have known to get for my main appointment. I kind of have a better understanding of what I wish to ask also. This is obviously if I find a second specialist!

    1. Thank you so much Shruti!
      That long wait can feel stressful, but knowing that it’s just the nature of the beast is so important!
      I’m impressed by your willingness to take on those extra appointments. I can see that as a step towards at least knocking out some of the possible diagnoses!

  2. Really helpful points Alison! i really agree that sometimes a long wait can be a good sign. I just waited about 8 months to see someone privately, when usually you wait about 2 weeks max here in the UK for a private appointment. It was so worth it! She is booked up because she is such an expert in her field.

    1. Claire!
      Absolutely! Don’t pick somebody JUST because they’re a long wait – but yes, the well-known experts are often worth the wait!

      Al and I have had waits in the past and when we’ve known WHY we were waiting it was often worthwhile. And for people not used to the waits for specialists, it can just feel overwhelming. I wish that we didn’t have such long waits for the right doctors, but that’s part of the reality, so having realistic expectations can be so helpful!

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