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hello.its.me's Post

hello.its.me

Seeking Diagnosis for Multiple Unexplained Symptoms in the UK

I have Ehlers Danlos Syndrome and Asthma and am in the process of getting a POTS diagnosis, but have other symptoms that are so far unexplained. I seem to have dermatographism and can create long lasting red inflamed lines by writing on my skin, have multiple food allergies and intolerances and have always struggled to find perfumes, creams and cosmetics i am not allergic to. I have gustatory rhinitis and have constant headaches that are worse in the spring or summer and my skin is almost always itchy. could this be MCAS and if it is how do I go about getting a diagnosis in the UK?

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bunbunii

Definitely sounds like MCAS. Most people with EDS & POTS also have MCAS. I have it as well but haven’t gotten the diagnostic testing yet. What you can do, is go to the doctor that diagnosed you with EDS and ask them for a mast cell work up because you believe you have MCAS. They should rightfully understand why you would believe that you do. Specifically ask to test for urinary N-methylhistamine (NMH) and N-methylimidazoleacetic acid levels, urinary prostaglandin D2 metabolite levels, and urinary prostaglandin D2 metabolite levels. This is the testing I need to get done (but have yet to do 💀). I’m based in the USA but I believe this should work in the UK as well. I hope you are able to get the care that you need soon!!

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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