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?
If your General Practitioner suspects that your symptoms may be caused by a mast cell disease, they should refer you to the appropriate specialist for further investigation.
Generally, any Immunologist or Haematologist can help diagnose a mast cell disease, such as Mastocytosis and mast cell activation syndrome (MCAS). If you have skin-based symptoms you may also be referred to a Dermatologist.
MCAS diagnosis can be challenging in that it does not yet have a clearly defined diagnostic metric, and is often associated with other underlying conditions, this means it can take more time to diagnose and find an appropriate treatment plan.
If you do not achieve an immediate diagnosis this does not mean your symptoms are not legitimate. If you need support finding a specialist in your area, please contact us.
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 (-/10)
- your knowledge/thoughts on possible triggers
- any strategies you have implemented for managing/ treating symptoms and how effective they are (-/10)
Keep this info brief and in bullet point form.
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 Zoom 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
TAMS hopes to resume face to face support groups in 2022, depending on government advice re the pandemic.
Anyone wishing to host a support group meeting in their area, please contact Sue