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Bogobarb22
Multiple Myeloma Discussion • February 27, 2024
Seeking Support: MGUS & Multiple Conditions
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Hi, I'm new here and wondering if there is any sort of virtual support or discussion group? Or is anyone else interested in having one? I've had MGUS for about 10 years along with several genetic disorders (probable mastocytosis, hereditary alpha tryptasemia, hypogammaglobulinemia, Ehlers Danlos, Grover's, pilomatricoma, etc). Basically I don't make enough normal antibodies and I'm allergic to everything. Makes me extremely hard to treat. I'm new to Colorado and have not been able to find physicians who are familiar with the interactions of what I have. Plus the extremely dry air and high elevation here seem to make everything worse. Any chance that anyone knows a geneticist who treats? A rare disorders specialist? I'd welcome any suggestions, or hearing from anyone in a similar position. And a support group might be lovely. Thanks! My best to all.
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