Story about Melkersson-Rosenthal Syndrome .

Life long misdiagnosed

Apr 29, 2022

Year Condition Began: 1984


At a very young age I had facial edema that would come and go. At the age of 22 I had Bell’s palsy that lasted 6 weeks and distorted my whole face. This would come and go and each time, steroids would allow face to recover. I have had a total of at least 15 Bells Palsy attacks. In April of 2021, I received the Johnson and Johnson covid 19 vaccine. May of 2021 I began to have lip, tongue, gums, and face swelling which was completely new besides the eye swelling. I was given steroids but did not recover. It became a vicious circle and as soon as one thing would get back to normal, another part of my face would swell. I was finally sent to a specialist and in December of 2021 I was officially diagnosed with Melkersson Rosenthal Syndrome. I was sent to an Autonomic Doctor due to severe ringing in the ears causing pain. I have now been found to suffer from numerous nerve dysfunctions, and 100% loss of sensation in right side cornea and 80% loss of facial movement right sided as of April 2022, still awaiting blood work and additional testing. On May 26th, 2022, I will undergo a total facial decompression at Stanford in California state.

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