Hi Paula,
Can I ask what your levels are?
I had Monoclonal gammopathy of unknown significance (MGUS) for 3.5 years with slow rises in M proteins. I started at 9.6 after blood tests for an operation flagged it. I had annual checks and last July they were 12.6 but in January I got a tooth infection that lasted 3 weeks and then in May I thought I had pulled a muscle between my shoulder blades and it then fractured and my MM diagnosis was given. My levels had jumped to 28 in 8 months. This is not to scare you but to make sure you keep an eye out for long lasting infections or unexplained back pain that gets worse. I personally feel they shouldn’t wait for levels to reach 15 as if I had chemo earlier I wouldn’t have had two spinal fractures. My levels are now 5.2 with 3 chemos left before stem cell transplant. I’m doing well but it’s a constant shadow.
I wish you the best but keep an eye out for back pain that gets worse and speak to your consultant if you’re worried.
Best wishes
Dawn
Hello Dawn,
Thank you so much for sharing.
I have been searching so long for someone share story on Monoclonal gammopathy of unknown significance (MGUS) to MM. I have been diagnosed with Monoclonal gammopathy of unknown significance (MGUS) last year.
I have a lot of health issues but apparently I have been told I only have Monoclonal gammopathy of unknown significance (MGUS) which will not have any symptoms in theory so i gave to keep looking for other diagnosis.
Would you like to share if you had any health issues when you were declared Monoclonal gammopathy of unknown significance (MGUS)?
Like fatigue, chronic pain in neck, arms back or anywhere
Any stiffness in morning or numbness in fingers or hands or feet?
Do you know any clinical trial?
I wish you best of luck for your transplant and fastest recovery.
Tx
Swara
Hi @Swara even if others do or do not have similar symptoms to you perhaps you might consider seeing your GP as the symptoms you are describing could be related to all sorts of reasons.
As for clinical trials the Blood Cancer UK support line might be able to assist
What do your medical team suggest as the way forward as they know your whole medical history?
Really look after yourself and please do keep posting
Sorry for the delay.
It’s been quite a time for me with so much treatment.
I had no real symptoms other than the ones I put down to menopause. Sweating after doing very little, suddenly needing afternoon naps.
I didn’t feel unwell.
Hope that helps
Dawn x