Diagnosed with MGUS and CHIP with M spike
For the last couple of years hematologist thought I had polycythemia. Today I was just diagnosed with MGSU and Chip..
Anybody else here diagnosed with both and do you know if that is common? Would love any experiences you’ve had with either.
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@gingerw @mattymatilda Yes. Thank you so much for the update. You are so right. Every patient needs to advocate for him/herself. I’m glad you are getting answers and information about next steps.
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2 Reactions@colleenyoung
Very interesting. I hope they are studying us at 91!
@mattymatilda I am currently working with a hematologist/oncologist because of M-Spike and other abnormalities in my blood work. Just had more lab work done and will be going over those results next week. May I ask if the bone marrow biopsy is painful and are you in the hospital or as outpatient? Can you tell I am nervous of the unknown? Thank you for your support.
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1 Reaction@mrsruby welcome to Mayo Clinic Connect. I’m so glad you found us. I have not yet had a BMB but many of our members have.
I’ll post a link to that discussion.
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1 Reactionhttps://connect.mayoclinic.org/discussion/bone-biopsy-pain/
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2 Reactions@mrsruby hi there. I'm sorry to hear you're going through all that. For your bone marrow biopsy be sure and tell your doctor you need sedation. You must request it with your doctor and he must request it with the hospital. I've had two bone marrow biopsies. The first was without sedation and the second one was with sedation. The second one was much much easier. It was the kind of sedation you get when you're having a colonoscopy. When I open my eyes and woke up I didn't realize that the procedure was over. You just don't want to show up for your appointment and be told your doctor didn't request sedation. Good luck it will be fine. 😊
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2 Reactions@pmm
I do feel a lot better just because I know my diagnosis. I spent years trying to get it. Thanks for your kind response.
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1 Reaction@gingerw hello. Thank you for your nice reply. I do not have an exact treatment plan yet. I am undergoing lots of tests to see if I qualify for any clinical trials. Just started chemo.
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1 Reaction@mattymatilda Thank you for the information. I have written your suggestions down in my notes. I'm so thankful for this support group.
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1 Reaction@mattymatilda not old! My theory, which I think is valid, is they originally only tested the elderly. Now they are finding many things “reserved” for the elderly in younger folks because they are doing the tests to look. Sure, everything is more common in the elderly, but I think, and we are finding, many younger folks have these disorders as well. Even middled aged folk like us!