Not 24 hours after being discharged from the ER for unspecified chest / arm pain, repetitive bouts of prolonged pre syncope and three syncopic episodes and no answers but “do you have a history of depression?” I had horrible and terrifying reaction to a non contrast MRI today (my internal organs felt like they were burning and going to melt and dizzy like my head was spinning 1,000 mph, nauseous, nerve and muscle pain, itchy skin, eye pain, migraine, rigors none of which have gone away) and then another reaction to EKG adhesives 30 minutes later (literally on me for less then 60 seconds) and then another reaction to dinner and another to tums and then to end the day with a cherry on top with the usual rashes after I shower, wash my face, etc.
Needless to say my Allergist suspects MCAS and ordered a tryptase script and referred me to a specialist. She also wrote me a script to get a second tryptase test done in the ER the next time I have a reaction to see what it says.
In the mean time she wants me on Allegra and to lay off the Benadryl as it keeps me in a cycle but if I feel like I’m going into anaphylaxis then to take it. OH and I got an email in the hospital that Mayo Clinic in Minnesota declined me because they don’t have the availability of specialist for my needs. Super 👍🏻 Next try Florida.
I mean, does it ever end?
Also, has anyone had that kind of reaction to food or non contrast MRI’s before? No one could understand what was happening to me. •
#medicalmystery #awareness #hypothyroidism #tendinitis #invisibleillness #chronicillness #dysautonomia #autonomicdysfunction #POTS #smallfiberneuropathy #neurocardiogenicsyncope #ehlersdanlossyndrome #EDS #MRI #MRIReaction #myalgicencephalomyelitis #raynaudsdisease #siccasyndrome #vocalcorddysfunction #dystonia #gastroparesis #sensoryprocessingdisorder #migraine #chronicpain #MCAS #chronicillness #notalldisabilitiesarevisable