Does anyone have neuropathy related to MGUS?

@agatha679 Like you, I had many tests done for the neuropathy in my left leg/foot. They were looking at spinal issues, and all. In the end, it is caused by the nerve involvement of the underlying MGUS that morphed into active myeloma in short order. [I tell people that being an over-achiever, I just couldn't let MGUS lay dormant like it normally does. I was an active myeloma patient within 18 months of my diagnosis of MGUS.] Yes, the neuropathy continues, and like you, the outside of my left foot is especially affected. I use a cane to help ensure I don't lose my balance. I tried Gabapentin for a while, but the therapeutic doses are more than my kidney issues can handle, so I quit it It is more of a "well, it is what it is" situation for me at this point.
Ginger

Hello @quarksunite, Welcome to Connect. I've never heard of MGUS causing neuropathy. I also only have the numbness with my neuropathy and haven't found any real solutions to make all go away. I do take supplements that I believe have slowed or possibly stopped the progression but that's subjective on my part. I shared my story in another discussion here - https://connect.mayoclinic.org/comment/310341/.

There is another discussion that you might find helpful although it's not specifically related to MGUS.
--- Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/.

You can find a list of supplements that may help on the Foundation for Peripheral Neuropathy on the Complementary and Alternative treatments here - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf.

How long have you had the numbness?

I have Mgus....for over 10 years....I have neuropathy for 10 years.
I have diabetes and have been told that my neuropathy is due to the diabetes. Who knows?
I go to acupuncture every Wednesday for the neuropathy and it knocked it down to a 1 or 2 (on the pain scale)
Gin martinis help a lot as well! Good luck!

I am new to this forum due to a recent MGUS diagnosis that revealed itself after an appointment with a neurologist. I’m finally back to the neurologist after several months of appointments and tests geared toward my blood disorder and myriad other possible issues that surfaced via the full body PET scan (liver lesions, brain and heart calcification, etc.), but I digress. I have a spine MRI and an EMG scheduled next week. My questions is whether it’s possible that MGUS could be causing the neuropathy. What is the experience of other forum member with MGUS?

I am new to this forum due to a recent MGUS diagnosis that revealed itself after an appointment with a neurologist. I’m finally back to the neurologist after several months of appointments and tests geared toward my blood disorder and myriad other possible issues that surfaced via the full body PET scan (liver lesions, brain and heart calcification, etc.), but I digress. I have a spine MRI and an EMG scheduled next week. My questions is whether it’s possible that MGUS could be causing the neuropathy. What is the experience of other forum member with MGUS?

Hello @mcjohn, We have other members in our forum who have MGUS with neuropathy. There is a correlation between the two. I a good article online which may help you in understanding the possibility of the neuropathy in relation to your blood disorder.

Here’s a link to the discussion in the forum with members @gingerw @circawdm. @quarksunite and others. Don’t hesitate to pop into the conversations!
https://connect.mayoclinic.org/discussion/mgus-neuropathy/
This article is worth reading. You do not have Multiple Myeloma, but MGUS can sometimes progress to that disease. This article is from a MM online support site and I felt the information would be useful for you.
https://www.mymyelomateam.com/resources/mgus-and-peripheral-neuropathy
You have quite a bit of medical excitement going on right now. Wishing you all the best with your upcoming tests. Is there anything else I can help you with?

Thank you, Lori, for the information. I had a spinal MRI yesterday and follow-up appointments with my oncologist today and neurologist next week. I hope there can be some collaboration between the two doctors. As a lifelong endurance athlete (running, swimming and cycling), the MGUS/neuropathy is very frustrating, even at age 66. I’m not sure I could live a sedentary lifestyle.

I feel your pain, @mcjohn. Making these adaptations later in our lives when we’ve been so active is quite a challenge. I’ve had to opt for lower impact physical activities but that drive to keep moving and to be our healthiest selves, is what keeps us pushing forward through adversity. Fortunately for us, we can accept, adapt and move on! ☺️. Good luck with your appts today!
My spinal MRI, Friday, didn’t show anything that should be causing my issues so I also have a consult coming up with a neurologist.
One thing I have to share is yesterday I had a very therapeutic and long awaited, deep tissue massage. It had a very profound reduction in some of my symptoms which I experience while trying to sleep. Fingers crossed this keeps up! I’ve also had great success with acupuncture sessions as well.
Have you tried massage or acupuncture?