Connect
← Return to Does anyone else have MGUS?
Discussion
Blood Cancers & Disorders | Last Active: Sep 19 12:31pm | Replies (818)
Comment receiving replies
My husband was diagnosed end 2021 and I was diagnosed last week. He had a stroke early last year and, as I now know, we didn't ask enough questions about his diagnosis. We do not know which type he has and I have not had an opportunity to talk to anyone about my diagnosis, just got a letter! We are in the UK. AS you say I wish I knew what did this to us so I could avoid it or at least tell others about it, whatever "it" is.
Replies to "My husband was diagnosed end 2021 and I was diagnosed last week. He had a stroke..."
Connect
I’m very sorry to hear this 😔
I agree it would be super helpful to find out the details of diagnosis; I have a colleague who was Dx’d with IgM kappa who has some form of brain vasculitis - she had 3 strokes before they figured out what was going on, and that the vascular issues were related to her unique form of MGUS (there are other sub-categories that are specific to her, however those details are not known to me).
I am in Au, otherwise I would try to help you in some way.
Having said that, I hope there is a mechanism where you can speak with a haematologist directly, who is a specialist in myeloma and MGUS, who will at the least give you all the defining test results, but will go further to inform you of the likely associated symptomatology/things to watch out for according to each type.
Wishing you the very best.