TAMS receives a lot of emails, calls and messages from people seeking diagnosis and treatment for their mast cell illness. As expected, a lot of people are asking similar questions, so we have put together some information to help you.
Who can diagnose or treat a mast cell illness?
Generally, any immunologist or haematologist should be able to help diagnose mastocytosis and mast cell activation syndrome. MCAS is a little challenging in that it doesn’t have a clearly identifiable diagnostic process as Mastocytosis does, and is often associated with other underlying conditions, so it can take a little more time to work through the process to diagnose and then find an appropriate treatment plan. If you have a skin condition, a dermatologist will be able to assist you.
How do I find a specialist?
It is always preferred to look for a specialist close by where you live to minimise the stress and expense of going too far for one. It may be that your local GP is more familiar with those close by. Have a chat with your GP about a suggested referral to a specialist in your local area.
You can search for Immunologists and Allergists in your area on the ASCIA Locate a specialist search tool for Australia
Or search Health Engine for Haematologists
One thing we have learned is that finding the right doctor is essential however what works for one mast cell patient and personality may not be a good fit for another.
Please note TAMS does not recommend any specialists in particular as this is unethical for us to do as an organisation. We do not yet have a directory of specialists but we are hoping to develop this with specialist co-operation.
How important is my GP?
It will inevitably be your GP who will work more regularly with you to manage your Mastocytosis or MCAS if this is your diagnosis.
I have an appointment, now what?
In the lead up to your appointment, please make some brief notes for your specialist on:
- your symptoms
- rating of symptom variations, for example, how bad they can be when you experience a flare/or experience symptoms to when they don’t ( /10)
- your knowledge/thoughts on possible triggers
- any strategies you have implemented for managing/ treating symptoms and how effective they are
Keep this info brief and bullet point. Your specialist will work you through a range of questions such as this so it’s always useful to be prepared with info to provide them. You can always offer to leave the information with them.
I want more information
Please apply to join our Patient Support Group on Facebook where you can talk to other patients about their experiences and more.
TAMS Online Support Groups
TAMS runs free monthly online support groups for members and potential members. Visit our Facebook Events page for registration information.
Do you suffer from Mastocytosis or MCAD? Join the Australasian Mastocytosis and MCAD Facebook Support Group.
Carers are invited to join the Mastocytosis Australasia Carers (MAC) Facebook Support Group.
This is the place for you to share, listen and vent your thoughts and experiences.
TAMS Face to Face Support Groups
Face to Face Support Groups will resume after social isolation concludes. Anyone wishing to host a support group meeting in their area, please contact Sue