Walk into every appointment ready.
Prep guides for 10 different specialists to help you walk into every appointment ready with the right questions.
These booklets pull together the questions patients and families in our community most often wish they had asked, organized so you can bring them straight into your appointment. Each one is a free PDF you can print, save to your phone, or share with the person coming with you.
The best questions show up after you leave.
We built these so they show up before you walk in.
Appointments with specialists are short, and complex conditions do not fit neatly into fifteen minutes. Patients told us the same thing over and over: they left with answers to the questions they remembered, and drove home thinking of the ones they didn’t. These guides are the fix. Every one is organized by topic, written in plain language, and ends with advocacy-minded questions and a short list of what to bring.
You do not need to bring every question to a single visit. Pick the three to five that matter most right now and save the rest for a follow-up. Most providers welcome a short, prioritized list.
Important disclaimer: these guides are educational and supportive in nature, not medical advice. Every diagnosis, test, or treatment decision should be made together with your qualified healthcare provider.
Four steps before the visit
Pick the right guide
Choose the booklet for the specialist you are seeing. If you are seeing two in one week, bring both. The questions are different for a reason.
Mark your top questions
Read through once, then star the three to five that matter most for this visit. Lead with those so they get asked before time runs out.
Gather what to bring
Every guide ends with a “Helpful things to bring” list: medication and supplement list, symptom timeline, imaging and notes, and more.
Write down the answers
Bring a support person or ask to record. Write the answers next to the questions so you have a record for your next provider.
Ten specialists. Ten booklets.
Each card lists what the guide covers. Open any guide to read or download the PDF; it opens in a new tab. Every booklet also includes the conditions it applies to and the sources behind it.
Core care team
The providers most patients in our community see first and most often. Start here if you are newly diagnosed.
Primary care provider
Care coordination · Referrals · Whole-person tracking · Preventive careYour primary care provider is the hub that keeps specialists talking to each other. This guide helps you build that coordinating role on purpose instead of hoping it happens.
- Building your care-coordination team
- Referral navigation
- Whole-person symptom tracking
- Medication oversight
- When to escalate to a specialist
- Preventive care with a complex illness
Neurologist
Headaches · Nerve pain · Dysautonomia · Medication management · ReferralsFor the symptoms that are hardest to put into words. This guide helps you describe them clearly and covers headaches, nerve pain, dysautonomia, EDS-related concerns, and when neurosurgery should be in the room.
- Describing your symptoms clearly
- Headaches and head/neck pain
- Nerve pain and sensory symptoms
- Dysautonomia and POTS
- Medication management
- When to involve neurosurgery
Neurosurgeon
Diagnosis · Imaging · Surgical planning · Recovery · Long-term follow-upThe questions to ask when a syrinx, Chiari malformation, or tethered cord is on the table, whether surgery is being recommended, considered, or ruled out for now.
- Understanding the diagnosis
- MRI and testing
- When surgery is being considered
- The procedure itself
- Expected outcomes and recovery
- If surgery is not recommended right now
Connective tissue and joints
For hypermobility, EDS, scoliosis, instability, and the hands-on care that goes with them.
Geneticist or rheumatologist
Hypermobility · EDS diagnosis · Genetic testing · Autoimmune workupFor the hypermobility and connective-tissue side of the picture. Covers EDS criteria and types, what genetic testing can and cannot tell you, and the autoimmune workup.
- The hypermobility evaluation
- EDS diagnostic criteria and types
- Genetic testing options
- Multi-system evaluation
- Autoimmune and rheumatologic workup
- Referral pathways
Orthopedist
Joint instability · Hypermobility · Scoliosis · Bracing vs. surgeryJoint instability, scoliosis, and the bracing-versus-surgery decision. This guide helps you weigh conservative management against procedures with the right information.
- Joint instability and hypermobility
- Scoliosis and spinal alignment
- Bracing versus surgery
- Non-spinal joint concerns
- Physical therapy and conservative care
- If surgery is recommended
Physical therapist or chiropractor
Hands-on care · Hypermobility-safe techniques · Self-care tools · Provider vettingHands-on care can help or harm depending on who is doing it and how. This guide covers safe technique, exercise, flares, post-surgical care, and how to vet a hands-on provider. Includes a self-myofascial release toolkit.
- Understanding your treatment plan
- Hands-on technique and adjustments
- Exercising and strengthening safely
- Flares and post-surgical care
- Self-MFR toolkit
- Hands-on provider vetting
Whole body and mind
The specialists who treat what travels alongside the diagnosis: immune reactions, mental health, nutrition, and the whole-body picture.
Allergist or immunologist
MCAS · Environmental & food allergies · Anaphylaxis action plansFor mast cell activation syndrome, environmental and food allergies, and reactions that no one has connected yet. Includes building an anaphylaxis action plan.
- Understanding MCAS
- Environmental allergy workup
- Food allergy and sensitivity workup
- Triggers, patterns, daily management
- Anaphylaxis action plan
- Coordinating with other specialists
Psychiatrist or therapist
Mental health · Medical trauma · Medication safety · Coping & identityLiving with a complex diagnosis is a mental-health event too. This guide covers medical trauma, diagnostic uncertainty, medication safety, grief, and identity, and how to keep your mental and physical care teams connected.
- Mental health impact of chronic illness
- Medical trauma and diagnostic uncertainty
- Medication safety and interactions
- Coordinating with your physical health team
- Coping with uncertainty and pain
- Grief and identity
Functional medicine provider or dietitian
Whole-body workup · Nutrition · Vetting supplements wiselyFor whole-body and nutrition-focused care. Covers testing, dietary approaches, supplement and medication recommendations, and how to vet supplement quality so you are not paying for the wrong thing.
- The functional medicine approach
- Testing and workup
- Nutrition and dietary approaches
- Supplement and medication recommendations
- Lifestyle, stress, nervous system
- How to vet quality supplements
Emerging treatments
For when you are considering a treatment that is newer, less regulated, or outside standard care. Vetting comes first.
Regenerative care or stem cell clinic
Vetting clinics · Understanding evidence · Protecting your safetyRegenerative therapy is promising and under-regulated at the same time. This guide helps you understand exactly what is being offered, what the evidence supports, and how to vet a clinic before you commit money or your safety.
- What is being offered
- Evidence and realistic expectations
- Safety, risks, emergency planning
- Cost, logistics, insurance
- Coordinating with your core team
- Vetting a regenerative clinic
Show up with the record.
Your history is the most useful thing in the room.
- A current medication and supplement list, with doses and the reason for each.
- A symptom timeline or journal highlighting new, worsening, or unusual symptoms since the last visit.
- Imaging and reports. Recent MRI or other imaging on disc or in a portal, plus the written radiology reports.
- Specialist notes and labs from other providers, in case this office does not already have them.
- A list of every specialist you see and the date of your last visit with each.
- Your written questions, prioritized, and a support person to help you remember the answers.
Every guide includes a set of these. A few that apply at almost any appointment:
- If I feel dismissed or like my symptoms are being minimized, how can we make sure that does not happen here?
- Will you document my full symptom burden, not just today’s complaint, so my history is accurate for future specialists?
- If you are not familiar with one of my rarer conditions, are you open to learning alongside me or connecting with my specialists directly?
Before and after the appointment
Want a guide we haven’t written yet?
Tell us which specialist you wish you had been ready for. These booklets exist because patients asked for them, and we keep adding to the set. You can also read about the procedures and surgeries and medications that may come up in the conversation.
Disclaimer
These appointment prep guides are educational and supportive in nature and are not medical advice. They are meant to help you prepare questions for a qualified healthcare provider, not to diagnose, treat, or recommend any test or therapy. Every diagnosis, test, or treatment decision should be made together with your own care team. Each guide lists the sources it draws on in its final section.
Questions
Email us at info@iamheardcoalition.org. We can’t give medical advice, but we can help you find resources and providers.
The guides
- I AM HEARD Coalition. Appointment Prep Guide: Questions to Ask Your Primary care provider (PDF). iamheardcoalition.org/s/pcp_Appointment_Prep_Guide.pdf
- I AM HEARD Coalition. Appointment Prep Guide: Questions to Ask Your Neurologist (PDF). iamheardcoalition.org/s/neurology_Appointment_Prep_Guide.pdf
- I AM HEARD Coalition. Appointment Prep Guide: Questions to Ask Your Neurosurgeon (PDF). iamheardcoalition.org/s/neurosurgery_Appointment_Prep_Guide.pdf
- I AM HEARD Coalition. Appointment Prep Guide: Questions to Ask Your Geneticist or rheumatologist (PDF). iamheardcoalition.org/s/genetics_rheum_Appointment_Prep_Guide.pdf
- I AM HEARD Coalition. Appointment Prep Guide: Questions to Ask Your Orthopedist (PDF). iamheardcoalition.org/s/orthopedic_Appointment_Prep_Guide.pdf
- I AM HEARD Coalition. Appointment Prep Guide: Questions to Ask Your Physical therapist or chiropractor (PDF). iamheardcoalition.org/s/pt_chiro_Appointment_Prep_Guide.pdf
- I AM HEARD Coalition. Appointment Prep Guide: Questions to Ask Your Allergist or immunologist (PDF). iamheardcoalition.org/s/allergist_Appointment_Prep_Guide.pdf
- I AM HEARD Coalition. Appointment Prep Guide: Questions to Ask Your Psychiatrist or therapist (PDF). iamheardcoalition.org/s/psychiatric_Appointment_Prep_Guide.pdf
- I AM HEARD Coalition. Appointment Prep Guide: Questions to Ask Your Functional medicine provider or dietitian (PDF). iamheardcoalition.org/s/functional_medicine_Appointment_Prep_Guide.pdf
- I AM HEARD Coalition. Appointment Prep Guide: Questions to Ask Your Regenerative care or stem cell clinic (PDF). iamheardcoalition.org/s/regenerative_Appointment_Prep_Guide.pdf