Anyone out there with mastocytosis diagnosis

Posted , 2 users are following.


Over 2 yrs on and still waiting for a diagnosis. just referred finally as I worked it out myself to hematology oncology in Liverpool

can anyone share their journey, and which tests , professional you saw

your symtoms and anything you do that helps

how do y secure insurance for travelling too and any companies please

0 likes, 1 reply

Report / Delete

1 Reply

  • Posted

    Hi Debbie,

    I was diagnosed 4 weeks ago after 14 ish years of being told there was no diagnosis for the "rash".

    I had a biopsy taken from my leg 12 years ago in the UK and they said it was inconclusive and there was no follow up as the only issue with it was cosmetic- the rash goes like a port red in hot or really cold temps and is very obvious- I had total strangers ask me about it in the supermarket line!

    Fast forward to 2021, I had a crazy allergic reaction over night and woke up with a very swollen face and went to see my new GP in Ireland for the first time- we pay for that over here so when she asked if there was anything else I thought why not! She referred me to a specialist at the hospital but because of Covid I heard nothing for over a year. June 2022 I had punch biopsy taken from my arm- was told I had cutaneous mastocytosis and that every 6 months they would take bloods etc to monitor. 7 weeks ago I got a call to go for tests and when I got there they said I was having a bone marrow biopsy as my white cell count was high on the biopsy from June last year- not something I knew. Along with symptoms of headaches, severe bone pain, eye pain, allergic reactions, itchy sjkin and the rash they sais that I have systemic mastocytosis and the staging will be given at my results appointment in 2 weeks.

    How are you getting on? What tests have you had?


    Report / Delete Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up