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Hi
My official diagnosis is "undignosed Anaphylaxis" which means there is no specific thing i react to. I just react and suffer very serious anaphylactic shock. I can continue to shock in hospital suffering multiple shocks back to back. My previous hospitalised shocks were about 8 years ago and i fought for my life. Until Jan 2017 when I was in a coma [unrelated to my anaphylactic diagnosis] and i suffered a terrible reaction to a medication. Then whilst in recovery in ITU I also reacted to creams, plasters, dressing etc [again un connected but hospital wont tell me what drug i reacted to and have not updated my medical records ?!?! I only found out as my husband told me about my face, mouth and hands swelling up whilst i was in my coma ?!?! have this included in a complaint with hospital as i believe i have a right to know] Im not allowed an epi pen and just live in fear of a reaction at anytime. Am i unique ? are there others out there ?

Hello,

I am sorry to hear about your problem. You can request a copy of your notes from the hospital but it can be very difficult for a non medic to navigate through medical records. Also it is unlikely to help you to identify to what you might have reacted (I have to say that sometimes it is impossible to identify a cause of anaphylactic reaction). I think your best option would be to request a referral to an immunology consultant in your hospital. The first consultation is likely to be a discussion with you (and possibly your husband) about what your questions are and what you (and your husband) may remember. The specialist is then likely to need to request your notes and review them and subsequently to arrange to see you to try to answer your questions and order tests (if they are likely to be useful).

I hope this is helpful.
With best wishes,

Dr Anton Alexandroff FRCP(UK) PhD CCT(Derm) FRSM FAAD
Consultant Dermatologist and Honorary Senior Lecturer
British Skin Foundation Spokesperson
Harley Street Dermatology Offices, Nuffield Health, Spire and BMI Hospitals, London, Cambridge, Bedford and Leicester

http://www.alexandroff.org.uk