First immunology appointment

[Thetealharp]

Hi, I have my first immunology appointment soon, under the allergy clinic. Can anyone let me know what to expect? I think I might have MCAS due to the number of things I keep reacting to and that I have HSD, and likely h-EDS along with co-morbitities. .

Thank you

[Jenny3267]

Hi. I had an appointment with an immunologist. He didn’t believe I have MCAS but agreed to test tryptase which he said was normal so no MCAS even though I have most of the symptoms associated with this from reading Lawrence Afrin’s book on it.

[Thetealharp in reply to Jenny3267]

Thank you

[Woodpecker2021]

I guess it depends on the immunologist and their area of expertise and experience. Mast cell conditions can be challenging to diagnose. When I booked the appointment with Dr Croom at Nottingham Spire it was for a mast cell condition so had a 1 hr appointment instead of the standard half hr as there is a lot of discussion around symptoms, full history from birth, family history. I then had a tryptase blood test straight after and my results were 12.3 (baseline 8) so my diagnosis of hypertrytasemia was straightforward. My cousin was diagnosed with MCAS. She was on steroids at the time which affected her tryptase levels. My mum saw Dr Croom in June 21, her baseline was 8.0 on her tryptase blood result so she's recently done a 24 hr urine sample and she'll get the results in January when she has her follow up appointment. Do some notes for you to refer to at the appointment. My mum is 73 and has a lot of history so I did a full history (including any relevant family links) for Dr Croom to keep on the day and use as part of her follow up letter. We all react to different things with our mast cell conditons. We both did the same for Dr Hakim in London (both diagnosed in July 2021 with hEDS) and emailed our history and symptoms to him a week before our appointments which saved time on the day. Dr Hakim asked for the info in advance, Dr Croom didn't but it's helpful to take it as it's easy to forget to mention something.

[Thetealharp in reply to Woodpecker2021]

Hi, i am having a skin prick test and dermatology for skin patch test. So at then I will ask for the tryptase blood test. Thank you.