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I have been diagnosed with a rare CLL, MGUS, and NXG. B cell therapy is helping with the CLL. It's the nxg that's the pain in the ass. Skin lesions, and I have one in my eye. Steroid cream helped. Now after everything I've been going through I need at least two surgeries to repair my lower eyelid which is gone, and the hole in the side of my nose. Anyone else have nxg? I'd like to hear about it. I'm staying positive with humor, family, and music!
Replies to "I have been diagnosed with a rare CLL, MGUS, and NXG. B cell therapy is helping..."
I had to look up NXG, what I came up with was "Necrobiotic xanthogranuloma (NXG) is chronic, progressive, granulomatous disorder with the potential to affect multiple organs, with a notable strong association with paraproteinemias and/or lymphoproliferative disease that demands lifelong monitoring and vigilance."
I learn something every day.
I currently, just have IgA Kappa MGUS. Diagnosed 2/2023 due to symptoms of neuropathy although slight; lost my husband to MM 7/22. He was a young 70 before it hit, I just turned 66. Go figure. Watchful waiting and prayer is all I have at this point. Hopeful.
Welcome to Connect, @gabadoo24. I also had to look up NXG as I’m not familiar with that acronym. That’s quite a rare condition. While we’re waiting for other members who may have NXG to pop into the conversation, it’s great to have you here in the MGUS support group where you’ve already been greeted by @allstaedt57 and @nancyworld.
You’re also being treated for CLL. What types of treatment are you receiving?
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@gabadoo24 , I hope you find a fellow NXG sufferer here to compare notes with. It sounds difficult.
I'm finding music very helpful for my own state of mind. 😃 🪈🎶🎵