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Does anyone else have MGUS?
I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?
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@ea1 thank you for your reply!! So far this is the only forum I am a part of. You’re not the first person that has said to avoid the Facebook groups so I will. Have you made any changes to your diet? Do you consume any alcohol? I’m just wondering if it will make a difference at all or am I making all these changes for nothing 🤷🏻♀️
@theadosi
Doing fine. Just live your life and don’t attribute any pain to MGUS progression. I continue to get blood test once a year and seeing the Hematologist. I also avoid reading and following MGUS Facebook or other groups where people complain about ills related to MGUS.
Got to wake up every morning and be happy and thankful !
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2 Reactions@ea1
I joined The PCROWD Study Center for Early Detection and Interception of Blood Cancers
Dana-Farber Cancer Institute. http://www.pcrowd.org/
@kaiti hey Kaiti. Looks like you and I are the same! Any updates?
@ea1 hey there! I’ve just been diagnosed with the same number as you only I’m igg lambda. How are you doing? I’m envious of your lack of worry, how do you do it?!
@hsminc thank you for your post. This is reassuring for me as I’ve just been diagnosed with:)
@colleenyoung Thank you. I’m currently on 4 Zyrtec, 2 Zantac and 1 Singulair every day. When I have a lot of hives, I will take 1 or 2 Prednisone but I have Osteoporosis so I have to be careful how much I take. I was also doing Xolair injections every 28 days but since I’m still getting hives, my doctor wants me to do the injections every 14 days, once the insurance approves it that is.
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2 Reactions@carolduggan, welcome. Using search terms MGUS and hives, I found these comments from other members:
https://connect.mayoclinic.org/search/comments/
How do you manage the hives when you experience an outbreak?
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2 Reactions@loribmt Thank you so much for your response and comments. Of course, talking to people who suffer from the same thing is comforting, and it's good to share concerns and information. Thanks! Regarding your question, I couldn't specify that this diagnosis began with perimenopause, because this period started recently and I was diagnosed with MGUS in January 2023 by chance. I already had 0.8 mg of monoclonal protein, and during the semiannual checkups of the last two years, it hasn't increased yet 0,9mg. This makes me think it's something I've had for a while, if the curve has always behaved like it has the last two years since it was discovered. I hope it remains stable... God will provide.
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4 ReactionsI was diagnosed with MGUS in 2014 when I was 47. In 2015, I developed chronic hives that lasted a year. In 2020 I had chronic hives again that lasted about a year and in March of this year I broke out again and am still dealing with them everyday. People with MGUS who have other symptoms and develop hives are diagnosed with Schnitzler Syndrome. My allergy specialist doesn’t think it’s related to my MGUS because I don’t have the other symptoms. I have never had hives until I was diagnosed with MGUS. I have been tested for autoimmune diseases and they all have come back negative. I am so frustrated that they can’t figure out what is causing my chronic hives. Does anyone else with MGUS have chronic hives and doesn’t have a diagnosis for them?
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