Melkersson-Rosenthal Syndrome

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Melkersson-Rosenthal Syndrome
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    Did anyone here in the #MelkerssonRosenthalSyndrome group know that apparently there are only like 435 diagnosed cases of us worldwide?

    So where y’all from, what countries? And how were you originally diagnosed? There are only 15 of us in this group , I hope everyone answers, it’d be interesting to know !

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    Is this normal for MRS? I’m scared, it is happening more often and for longer periods of time now

    #MelkerssonRosenthalSyndrome #AutoimmuneAngioedema

    I was tentatively diagnosed with Melkersson-Rosenthal Syndrome back in December because of a swollen upper lip like this with redness above my lips too like this. The middle of my upper lip feels fairly hard too. Like #granulomacheilitis

    Is there anything we can do???? Will I just keep getting worse? it’s not an allergy I was tested for everything, and my blood didn’t indicate anything like #Lupus or #RheumatoidArthritis so is this really just a mystery I’ll have to live with? Does it get worse?