10 ways to talk with your doctor about MCAS
Seeking a diagnosis for MCAS can be challenging, especially when many doctors are unfamiliar with Mast Cell Activation Syndrome.
A common question we receive is, "How can we effectively present our MCAS case to ensure that doctors understand and listen?"
The following are some tips to help you make the most out of your doctor's appointment when being evaluated for Mast Cell Activation Syndrome. It's important to keep in mind that not all doctors are familiar with MCAS, so the more you can educate them and yourself, the more successful your appointment will be.
1. Prepare and practice. Organize your thoughts and questions prior to the visit. Write them down or type them out, so you have a reference. Practice what you want to say to prevent forgetting anything or getting flustered if the doctor rushes you.
2. Bring support. Having a family member or close friend in the room can provide comfort and serve as an advocate. They can help take notes and ensure your questions are addressed. Additionally, it's helpful to have someone to discuss the visit with afterward, as it's easy to forget details.
3. Be well-prepared. Prior to the visit, compile a list of problems and previous diagnoses. Provide a brief summary of your health history. Include a list of medications and allergies. Bring copies of key consultation notes, test reports, and results that are directly relevant to your condition. Avoid overwhelming the doctor with unnecessary records. Respect the doctor's time and focus on pertinent information.
4. Share Your Story: Start from the beginning and walk through the sequence of events that led to your current condition. If your doctor interrupts you with a closed-ended question, aiming for a
simple yes or no, try to elaborate and provide a more personalized answer. Describe your state before the symptoms appeared, with a focus on the quality of any pain or discomfort you experience.
5. Provide Requested Materials in Advance: Submit the necessary materials to the doctor's office well before your scheduled initial visit. Due to their busy schedule, the doctor's time during the visit is limited. By supplying the doctor with records concerning a complex new patient in advance, they will likely find time to review them prior to the visit, resulting in a more productive use of their time and yours.
6. Look for Compatibility Cues: Not all doctor-patient relationships are the same, and compatibility plays a crucial role. It will become apparent whether the doctor "gets it" or is willing to understand. If you sense the doctor will not make an effort to help, politely end the interaction as swiftly as possible to avoid wasting both your time and the doctor's time. Seek out a doctor who understands your needs and is willing to assist. Do not tolerate being brushed off or having your symptoms ignored. Invest time in finding someone who aligns with your medical philosophy and is receptive to your concerns.
7. Bring Your Research: If your doctor shows interest, bring a copy of a review article related to the disease for which you are seeking their help. Consider highlighting the aspects of the disease that seem to match your situation. This will help the doctor quickly understand how well your symptoms align with the documented behaviors of the disease as described in peer-reviewed literature.
8. Don't hesitate to ask the doctor about their thought process. Inform them of your interest in understanding the diagnosis and testing they are considering. Express your desire to participate in the decision-making process. By comprehending the procedure better, you can support the recommended treatment protocol more effectively.
9. Offer an Introduction to MCAS. If you are seeking evaluation or treatment for mast cell activation disease (MCAD), consider mentioning that recent research suggests MCAS is much more common than the rare disease of Mastocytosis. Physicians typically receive minimal training in Mastocytosis. Our experience shows that many physicians who learn about MCAD/MCAS subsequently recognize its presence in their other chronically ill, undiagnosable/unimprovable, "psychosomatic" patients. This awareness leads to better diagnosis, treatment, and improvement for such patients. Most physicians are motivated to help sick people recover. If they grasp that assisting you will enable them to help many others, too, they may find greater motivation to invest time and energy in your case.
10. Provide Referral Resources. If the opportunity arises, you can mention to the doctor that they don't have to struggle alone if they have any questions about Mast Cell Activation Syndrome (MCAS), a complex area. We have already walked this path and are happy to share what we've learned with other professionals. If the doctor would like to discuss your case with us, either before or after your visit, they are welcome to contact us. The more professionals who understand this prevalent, diagnosable, and treatable disease, the better it is for everyone, especially since none of us have received training in it.
It is worth emphasizing that despite the complexity and prior lack of diagnoses, your condition *can* be diagnosed and *can* be treated. Most patients eventually experience significant improvement with various treatments, even after being mysteriously ill for years, or even decades. Physicians are driven by a desire to help sick people recover, and they may be more willing to invest the time and effort required to learn something new if you inform them that there are diagnostic and therapeutic steps to take that have not been taken before.
Lastly, prioritize your concerns. If you have a lot to discuss with the doctor and time is limited, let them know that you may need to schedule another appointment to cover everything.