← Return to Does anyone else have MGUS?

Discussion

Does anyone else have MGUS?

Blood Cancers & Disorders | Last Active: Jun 15 7:51am | Replies (774)

Comment receiving replies
@sjgray

Been doing pretty good lately, but my anxiety is starting to get the best of me. My scheduled 3 month blood work is this coming Monday, 18th, and my follow-up appointment is on Sept. 28. Wishing and praying that everything is ok, hasn't progressed, but what if it's not?
In bed at night and my mind just keeps giving me scenarios. Some positive and some not so positive!
Praying that they find a cure for ALL of us!! Take care!

Jump to this post


Replies to "Been doing pretty good lately, but my anxiety is starting to get the best of me...."

I hope all is stable when you get the results 🌺
However, if not, there’ll be a plan - good docs know what to do. And ask questions like: What now? How do we proceed? What should I expect? What are the tests needed to confirm this? Etc 🙂
I’ve learned to pay attention to indicators like kidney function changes, peripheral neuropathy, pins and needles, fatigue, the amount of night sweat, bone pain, and swelling around my eyes/face, hands and feet. When all this starts getting worse, and doesn’t get better (say if it’s just because I’ve had to push myself or have had extra stress), I know things are changing, and I let the docs know (not that they bother with a response here in the public system). I have a chronic infection (low immunity), however the last 2 antibiotics caused aseptic meningitis (I couldn’t see and my brain hurt a lot), and ventricular ectopic issues (heart rate around 32-38 bpm), so at the moment the highest risk to health is an unchecked infection (Gp will not prescribe any antibiotics as she is worried about her liability insurance).
Having mgrs with a near doubling of M proteins since last (4 months apart), I still am not close to multiple myeloma, only smouldering - and nothing in terms of treatment regime changes here between SMM and MGRS, so whether I have MGRS or SMM is a moot point due to zero change in intervention approach.
If anything changes in your numbers, you’ve always got people to talk to here if you’re worried.
In terms of stressing, my approach is to put it into context of what else I have to do/deal with (work, function, etc), and it kind of melts into the background.
The only little concern I have is an upcoming knee surgery to address the broken prosthetic (I had a bad fall and damaged the knee replacement), which has been broken since January (the public system is great at long term torture hehe), and the recent permanent loss of some kidney function when it comes to the drugs used in surgery/post op. considering the complications now encountered with antibiotics (which will be needed due to low immunity - kidney function greatly impacts how some drugs perform).
Anyway, that’s a worry for another day, and I’ll do more research on how best to manage (including what I can find on the adjusted doses of all the meds expected to be used) and have a discussion with the anaesthesiologist beforehand to make sure they don’t inadvertently jab me with something contraindicated.
If your worried, post your before and after numbers, if you’d like to 🙂🌺

@sjgray Oh, it is absolutely normal for us to feel the anxiety you speak of! Many have a periodic check-in with our doctors, and accompanying bloodtests. All I can say, is to live your life as you want to, do the things you want to. An increase in symptoms, or rise in numbers are going to happen when they happen. Eat healthy, exercise moderately, keep stress at bay the best you can. The biggest majority of us do not progress beyond the MGUS stage, or progress many years after diagnosis.

Is your mind keeping you awake at night? Have you tried journaling out what is running around inside your head, so you can then relax? It might be enlightening to see what comes out!
Ginger