← Return to Anyone else have Symptomatic MGUS?

Discussion

Anyone else have Symptomatic MGUS?

Blood Cancers & Disorders | Last Active: Nov 28, 2023 | Replies (73)

Comment receiving replies
@leslie2121

Hello again:

I think you’ve done such a deep dive on such a complex subject I don’t think I have anything to add- it would just be speculation.
I do want to get more clarity on what type of MGUS I have. I think it’s not clear yet as my M spike numbers are low and still evolving?

I’ve read somewhere that it’s not good when the uninvolved Immunoglobulins are low- meaning the involved/“bad” immunoglobulins crowd them out. I assume you’d be more susceptible to infections.

My appointment with Dr Mikhael was for a full hour by the way.

What’s the cause of your bone pain? Do you have osteoporosis? I discovered I did and took some heavy duty medicine to treat that after getting a compression fracture skiing. No more ⛷️now!
I think osteoporosis can be associated with MGUS.

I’ve moved from Dallas to Austin Texas to be closer to kids/grandkids and seeing a new oncologist in August to have here. I’m anxious to see what he thinks about everything.

Stay in touch- not too many people in the place we are in and I wish you well. Hoping our trip works out. 😎

Jump to this post


Replies to "Hello again: I think you’ve done such a deep dive on such a complex subject I..."

Hey there Leslie2121, yes I think it would be a very good thing to find out what type of MGUS exists, because (how I understand it) theres risks that are different for each type, in terms of not only progression, but systemic symptomatology.
And I also have read that having a reduced uninvolved Ig is detrimental to immunity - that is certainly the case for me in terms of both infection susceptibility and limited/stunted vaccine response.
That’s wonderful the appointment with Dr Mikhael went for a full hour! 😀 that would cost around $1000 here in the private system 😅
I’m pleased to hear the medication to treat osteoporosis helped, and I’m also sorry to hear you had a compression fracture - I hope it doesn’t give you trouble these days 🙂
I don’t have osteoporosis; I believe the issue I have is thickening of cortical bone, which is discussed here: https:// ashpublications.org/ashclinicalnews/news/3669/Understanding-Bone-Disease-and-Fractures-in#
Remove the space and the link hopefully should work (I still can’t post links). My bones are painful and have been since I have been putting on weight without increase in body size - which makes me think there’s some considerable activity in skeletal remodelling of some kind. Oddly, as a younger person I would have random bone pain and fatigue that kept me mostly sleeping for a few days at a time, then I would recover. I also didn’t have long bone fractures despite some transverse trauma/flex applied (a 220kg motorcycle landed squarely on my shin at speed, up against a concrete right angle kerb, but the only effect was a kind of cortical bone small crush injury at the pivot point of flex; I also had a 130kg man accidentally fall onto my arm which was trapped on an angle between the floor and a wall, his foot coming down full force on the middle of my forearm, which I felt flex, small-splinter, but not break. Years later I had an X-ray of that arm and it just shows barely any trace of bone injury. The only time I’ve had bones shatter is under very high compression force, due to a high force “rag doll” traffic incident where I was hit and then thrown into oncoming traffic). Apparently my bones don’t appear perfectly normal on image examination, but an explanation isn’t thus far clear.
Some bones have completely solidified, without any medullary content at all remaining (my jaw is mostly solid now, and tooth extractions via pulling is not possible because the roots are encased in solid bone besides the blood vessels).
It’s really nice to hear you’re closer to family, and I hope the new specialist is receptive to supporting proactively with good monitoring and listens to any changes if they do eventuate. 🙂
Thank you kindly for the well wishes - I really appreciate it 🌺