Mastocytosis?

[Redfleur]

Hi

I was diagnosed with MCAS back in 2015. I became incredibly ill after a antibiotic resistant Urine infection. I ended up in Intensive care and I have never fully recovered. I then started having terrible attacks involving my gallbladder and was hospitalised many time. There where no stones. I had the gallbladder removed successfully but reacted severely to the anaesthetic and was admitted for longer as I stopped breathing. My bladder stopped working for 2 days. Since I have had a few major attacks. I’m currently having one that is affecting my hearing. Although that started immediately after my second dose of AstraZeneca 2 years ago. It’s now affecting my eyesight. I’ve also had to stop my HRT patches as my skin became so inflamed. I’m starting to feel really low as the hearing issue has gone on so long. Whittington couldn’t see anything wrong with my ears on visual check. My GP has since decided to refer me to the Royal Free.

I am trying to get an appointment with my GP and want to raise the question about being tested for Mastocytosis.

what does the GP need to do to refer me for tests? And where do I get referred to in London?

Many Thanks

[jenniferBSc]

Hi Fleur sorry you have been so unwell, MCAS is a difficult disorder to control. I would recommend you contact Jess-UKMasto on the moderation team here, take care

[Mastomum]

Sorry to hear you are so low. Ask GP to refer you to immunologist or hematology. They should be able to test for tryptase levels that should indicate mastocytosis. Although I had this and immunologigist said levels normal and did not help me further. I was having a lot of symptom s indicating mast cell disease. I have managed to keep my reactions at bay by taking antihistamine s . Daily cetrizine and Ketotifen( your Dr can prescribe this) and avoiding any scents esp some laundry fluid, perfume. I also have had to go on a low histamine gluten free diet because my attacks are mainly ingesting triggered. I also have to take a beta blocker because my heart is affected. One drug that helped my bladder spasms was buscopan. It is used for irritable bowel but it really helped my bladder and can be bought over the counter. As for HRT I also could not tolerate parches but Oestrogel seems fine. Although there is a lot to manage I feel so much better (sometimes almost normal) sticking to this restricted eating plan and daily meds. Mast cells suck but you are not alone. Hope this helps a little. Get in touch if you need low histamine diet tips. I love food and was a chef in a previous life so trying to find delicious food that I can eat safely is an ongoing mission. Best wishes