Dear members,
We have drafted this brief guide on how to prepare for your Dr appointment. We feel that this should be a collaborative community effort, so would really welcome your comments, ideas and annotations. Thank you. Alina, Nel and Mads
How should I prepare for a doctor's appointment?
In any consultation, the time you spend face-to-face with your dr is limited. To get the most from your health care provider and an accurate diagnosis, preparation is the key. Good preparation will also go a long way to alleviate any anxiety you may be feeling about the appointment.
You increase the likelihood of an accurate diagnosis if you come prepared with the details and history of your problem, anticipate questions, know your medications and bring medical records(depending on country).
Our tips can help you make the most of your appointment.
- Organize your history
- Anticipate what the doctor needs to know
- Know your medications
- Secure your medical records
- Request a verbal and written summary
- Prepare questions
Organize your history
What is the process of diagnosis? As EM is based on clinical presentation and patient questioning ,the majority of the work lies in your description of your symptoms and pain . Due to the nature of flaring, photographic evidence is imperative. If you do not take evidence , you should try to induce a flare during the consultation. While it's true that for most conditions a medic gleans additional information from the physical exam, laboratory and imaging tests, there is no diagnostic test for EM so your evidence provides valuable direction. Tests may be given but these are generally exclusion tests for differential diagnoses and/or tests to discover whether your symptoms are secondary to another disorder or underlying condition. The more organized your presentation, the easier it will be for a dr to arrive at a diagnosis.
Our tips:
- Photographic evidence - take various printed examples of your flares and livido (mottling skin). Whether or not you take photos with you , its a good idea to induce a flare during the consultation. Stick your hand or foot under the examinations rooms washbasin faucet/or use a restroom.
- Keep a journal of your symptoms. Make a note of your different symptoms, pain levels, fluctuations, triggers ( e.g. heat, anxiety, fatigue, exertion, pressure) etc.
- Arm yourself with research. Print off key studies from the living with erythromelalgia forum and /or toolbox. If you cant find what you need- ask
- Enlist a relative or friend to help you prepare for and/or accompany you to the appointment.
Dr's appreciate an accurate history whether it comes from the patient or someone who clearly knows the problem. If someone does accompany you, be sure there's unified agreement to the story to avoid any confounding information.
- Be specific. Saying you 'feel ill' is not as helpful as, ' I flare a bright red, my feet burn especially after a hot shower, I cant seem to tolerate heat or shoes , and cooling these hot flares brings some relief '. Give as much information as you can. Again , make sure you specify the triggers for your flares .
- Talk first about the symptom that causes you the most discomfort/ most worrying.
Most EM'ers have multiple symptoms so prepare a separate history for each. Present them one at a time so you don't confuse your Dr , and strive to make it clear and complete. Be succinct!
Anticipate what the doctor needs to know
EM involves different symptoms and types of pain . Describe each symptom and pain separately. You should be prepared to answer the following questions:
- Where is the pain most severe?
- When did it start?
- Does anything trigger it?
- Is there anything you do to bring it on, make it better, make it worse?
- Is it present every day, or do you have pain-free days?
- Is it worst in the morning, as the day goes on, or constant?
- On a scale of 1-10, how severe is the pain?
- Is it constant or off and on?
- Do you have any other symptoms with it such as numbness, shortness of breath, itching etc.?
- Does the pain stay in one area(localised) or spread to other areas(diffuse)?
- Does it interfere with your daily routine?
- What has been its course? Is it stable or getting worse?
- Is this a new symptom or a recurrence of a previous problem?
These questions apply to most problems or symptoms. If you've thought about how you would answer them ahead of time, you will be well prepared. A shortened response time may leave more time for discussion before your appointment ends.
Know your medications
Although you may recognise your little red pill, the likelihood of your dr being able to identify it is slim. Not only should you type up a list but take ALL your medications -- prescription, non-prescription, vitamins, herbs, minerals - in their original containers to your appointment. Another thing to note on your list is any restrictive diet you may be following e.g. low carb, anti inflammatory, non dairy etc.. and whether you take any medications chronically. People often forget that diet impinges on certain blood tests taken for patient profiling . Its a good idea to keep an updated card in your wallet or purse with the names of the drugs, dosage and frequency. This helps your physician avoid potential drug interactions. Your dr will also need to know the medication dosage, frequency and your need for refills. It's not uncommon for patients to be seen by several specialists, each of whom prescribes different medications.
Each doctor needs to know what drugs you are taking, including those prescribed by other physicians. They assume you will be able to list all medications you currently take. If you can't, you may put yourself at risk.
Medical records
Some countries require that you take copies of your medical records from other dr's with you to appointments, including X-rays or MRIs as appropriate. If another dr has referred you, its a good idea to try to expedite the exchange of medical records. Very often, you must authorize the release of your records to the new dr. Not every dr's office will anticipate this or contact you beforehand to arrange for the transfer of records. Call ahead and ask how these arrangements should be made. The successful transfer of your records may help you avoid the expense and medical risk of repeat diagnostic tests.
If your health insurance ( depending on your country and its healthcare system) allows a consultation with a specialist, your first visit may be your only one with that doctor, so it helps to be as prepared as possible.
Request a verbal summary
While many healthcare providers are aware of the need to restate treatment plans or medication adjustments, others may not do so. Sometimes time restrictions decrease the amount of verbal reinforcement the dr can offer. Ask for a brief summary to make sure all points are covered and necessary prescriptions filled out. Ask what kind of follow-up is needed. Be prepared to take notes. Remember to request that a written summary be forwarded to you.
Ask for a brief summary of your appointment. A recent survey revealed patients couldn't remember more than two-thirds of the medical problems their doctor diagnosed following a general exam.
Questions you should ask during your appointment
Our tips:
- What is this problem likely to be among the possibilities?
- Is further diagnostic evaluation necessary?
- What can I expect from the natural course of this problem?
- Is there treatment available to better manage this problem?
- How long before I should see the effects of the medication?
- Under what circumstances should I notify the doctor?
Your Dr needs your help. If your expectation is that all you have to do is show up for an appointment and the dr will do the rest, your visit is likely to be a frustrating one, and you may put yourself at risk for misdiagnosis. Remember, EM is extremely rare and many of us have seen an average of 7 healthcare professionals and taken several years before we secured an official diagnosis . This guide delineates all the pitfalls we encountered with the sole aim of helping you secure that diagnosis and open the the portal to treatments that may help you better manage your EM condition. This drs appointment has probably been longtime coming so remember you must be your own advocate. Dont be afraid of calmly suggesting you may have erythromelalgia. Give the dr the research , photos, medication list , and symptom summary- let them read and digest. It might take a little time but you will get that official diagnosis. Remember - the community are here to support and guide you through this entire process.