These disorders typically require specialized medical professionals in a variety of areas. The main types of specialists
needed during the diagnosis process are Allergy & Immunology, Hematology, and/or Dermatology. Some patients require only
one but most need at least two for all the tests involved. Some require all three types of specialist.
Physicians will require a lot of time during initial consult and sometimes one or two follow-up appointments, to get a full
and complete patient history. The standard 15 minute appointments are never enough time for these disorders.
Some questions to help narrow down the possibility of a mast cell disorder are suggested as follows:- ("odd" or "unusual" means 'Is it outside the norm of what that person normally experiences in their life to date')
These questions are based on 10 years of patients reporting their experiences with MSC from when their symptoms began to appear,
patients not making any connection to the symptoms being possibly serious or escalating in type and number, and years later
finding they are diagnosed with mastocytosis or a related mast cell disorder. Patients historically have not mentioned some things
either because they didn't think it had relevance, they forgot, and/or the physician did not ask. We share this list of questions only to suggest these as starting points for physicians to begin. This list is not conclusive but we've tried to cover most of the common denominators reported by patient histories.
- Any odd physical reactions or feeling nauseous or 'off' after ingesting any foods or drinks? Which foods or drinks?
- Any unusual physical responses to stress, exercise or social gatherings?
- Any episodes feeling lightheaded, shaky, weak?
- Any vomiting and/or diarrhea? constipation? Persistently or occasionally? Precipitated by anything?
- Any shortness of breath or swelling anywhere at any time? Did anything specific precede it? (eating, exercising,etc.)
- Any unusual physical responses to temperatures while bathing or from weather?
- Any changes in memory, learning, retention, mental processing, understanding?
- Any skeletal or gastrointestinal pain or problems? Persistently or otherwise?
- Any unusual fatigue? Fainting? Persistently or following eating/drinking, activity etc.?
- Any skin spots, rashes, blotches, hives, sores, itching episodes? Frequently or persistently and/or permanently?
- Any extreme or unusual reactions to insect bites? What types of insects and describe the reaction felt?
- Increase in or unusually painful and long lasting headaches?
- Unusual fluctations or changes in hearing or vision quality?
- For women or young girls entering puberty, any difficulty with monthly menstrual cycles?
- Any physical reaction to clothing, fabrics, pressure or tight fabrics against skin? Or from contact with new furniture, materials or plastics?
- Any unexplained weight loss? Inability to put weight back on?
- Compare your lifestyle and schedule before your symptoms started to today - what adjustments have you made to
keep up with your lifestyle or accommodate/prevent any symptoms or reactions you've experienced?
- Any odd reactions to medications? Or to any medical procedures or tests?
- Any emergency medical situations experienced and what precipitated the emergency?
- Finally, pain - any experience of feeling deep tissue or persistent pain anywhere?
When a patient has been diagnosed with mastocytosis, MCAS or IA, they are best served, and physicians are better supported, by creating a 'Team of Healthcare Professionals' to provide proper care. Some patients may end up only needing one specialist and their family doctor, with that being enough. More complicated cases do require several types of specialists. Usually not forever, but during times of escalating or uncontrollable symptoms, two or more doctors are often involved. Once an adequate treatment protocol is found for the patient, often the team is reduced back to one or two specialists and the family doctor. All team members should report patient visits and all test results to each other to ensure everyone is in the loop and up to date on the patient's case. Some hospitals have created Chronic Illness Clinics or Centers. These may be the perfect model or approach to follow to care for a mastocytosis and mast cell disorder patient.
As an organization, MSC is extremely supportive of medical professionals faced with helping us. These disorders are complicated at times, patients are worried or scared, and it's definitely not easy to make sense of everything or find answers. Caring for a mast cell disorder patient means sometimes the answers to stop or alleviate a symptom cannot be found. That's equally difficult to face for all involved and we're sympathetic and accepting of these situations. However, MSC is constantly tracking medical research and gathering excellent information from patients and physicians. We'll keep looking for answers to contribute to solving these mast cell disorder symptom puzzles. MSC supports physicians, nurses, paramedics - all medical personnel - who are trying to help us and we encourage patients in Canada to build a mutually respectful, supportive relationship with their medical advisors. If we can be of any help at any time, please contact us. We're here to help. We're all stronger and have an easier road dealing with these disorders when we work together.