light chain MGUS

FormerMember
FormerMember
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Hello, i'm Michelle I have recently been diagnosed with light chain MGUS, although i'm suspicious that I had it since I was 38 i'm now 44 yrs old, my drs took near enough 2 yrs of bloods every month almost to decide there was something wrong and i had to see a specialist. then when i saw specialist he refused to say what it was he said there was something wrong with my white blood cells etc but not a peep about name, so after 1st app i went and googled and found MGUS did loads more digging in between this i had another app and still no diagnoses carrying on web sites came to light chain MGUS was adamant that's what i had so 25th july 2019 had appointment no one came with me this time and had a different specialist so i asked him what i had and he said we don't like to label it so i said is it MGUS? and i looked a little surprised i went on to say is it light chain MGUS? and he sat back in his chair looking quite surprised by now and he said YES that's right and i quickly said YES! shake my hand dr I've diagnosed something right for a change. I'm a bit of a hypochondriac on the quite I was so happy and relieved i didn't take much in after that i just sat that nodding with this big smile on my face and before i went i shook his hand again and he said i don't usually get this reaction to a diagnoses.  I went home told hubby and face timed daughter telling them with this huge smile on my face i felt like i was on a high for 3 days after i felt light slept better my pain was better (have fibromyalia too) and had energy too it was amazing . Well sorry for such a long winded story, but that's my story. thanks for reading me! chelle :)   

  • FormerMember
    FormerMember

    Hi Chelle, 

    Welcome to the forum, although I am really sorry to read about the reasons you had to post.

    I have light chain myeloma which is what light chain MGUS might turn into. But the most important word in that last sentence is might. There is absolutely no guarantee it will turn into myeloma and I sincerely hope that it does not and you can carry on with your life without having to deal with myeloma. 

    However, if you want more information, please feel free to join the General Discussion part of the forum. I had MGUS (although I never knew about it so can’t really help) but you may find some people there who have some experience of living with MGUS and who may be able to help you some more.

    All the best

    Greg

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Greg,

    Thanks for the reply i'm even totally new to forum's too, thank you for the advice and words your very kind sorry to hear about you, at least i got the heads up hey! ;)