Does anyone have neuropathy related to MGUS?

Yes I have neuropathy in limbs causes me to fall often

Years ago I kept falling, on ice, down stairs... So that was when I was diagnosed with polyneuropathy. I had PT to work on balance and that helped a lot. Strengthening exercises help by stabilizing joints; easier to catch yourself. I have a half-moon Bosu balance ball that I stand on, There are also online exercises for balance, but I sometimes stand on one foot and balance when I'm waiting in lines (I probably look like a flamingo).

Has anyone been diagnosed with MGUS (monoclonal gammopathy of undetermined significance) and developed neuropathy? My doctors feel my neuropathy is a result of the abnormal protein from MGUS in my blood. Excruciating pain in my foot and blasts of shocking nerve pain. My dr just started me on 2 weeks of high dose prednisone. I’m told if this doesn’t work there is some type of infusion that may help reverse it. Just curious about other experiences regarding this

@positivethinking, I combined your discussion with an existing discussion titled:

"Does anyone have neuropathy related to MGUS?"
- https://connect.mayoclinic.org/discussion/mgus-neuropathy/

The discussion has many posts about MGUS and neuropathy. I'd like to introduce you to @canderson12, @kayabbott and @mguspixi25 who have shared their story and how they have tried to manage their diagnoses.

My MGUS has progressed in the last 9 years, but my polyneuropathy doesn't seem to have worsened. It isn't associated with pain, but with some loss of both sensation and pain. Not a big problem unless I'm spurting blood and didn't notice the wound. I suspect it may be related to my celiac disease. Neuropathy can have a number of causes and associations, including diabetes, vitamin deficiencies, injuries and others. https://www.foundationforpn.org/causes/

@positivethinking
I have SMM and yes, there is a correlation between MGUS/smm/mm and neuropathy. These things also can cause low rbcs and iron deficiency and/or anemia. My leg pain was reduced substantially after two iron infusions. Good luck. I know how awful it is.

So happy to see this topic! I have IgM Mgus and the neuropathy has been horrible. After a lot of tests to look at the progression last summer, because of the neuropathy, my oncologist sent me to a neurologist and a pain management specialist. The oncologist felt the neuropathy wasn't coming from MGUS because she didn't think my IgM was high enough. The neurologist said it is definitely coming from the IgM. I am negative for anti-mag and for amloidysis.

The neuropathy started as pins and needles and numbness but then progressed to everything from fabric to just how I rested my feet and legs -- hurt. My skin felt like it was on fire, my bones would sometime feel they had broken from the weight of socks on toes. I felt like I had bed sores and blisters were there were none.

Pain management put me on Cymbalta which felt like a miracle. Most of the neuropathy seemed to go away and I was suddenly sleeping at night. But then when we got to a 90mg dose, I started rapidly gaining weight. Almost 40 pounds -- I was gaining about 15 pounds every 2 weeks. It was crazy. So now they have me very slowly coming off the Cymbalta, I am at 30mg now and should be off in the next three weeks. The neuropathy is slowly returning and I don't know what I'm going to do beyond lidocaine patches. They gave me a small dose of gabapentin to test but they are presuming it will behave the same way as the Cymbalta with weight gain and don't really think it is a good route.

So the end result, I am all ears to whatever everyone says works for them.... I am terrified of being back where I was but last night I could not sleep with restless leg issues, my pajamas and the sheets were just uncomfortable on my legs all night, so I know this is starting to return.

I am positive for the MYD88 gene mutation and I am experiencing Immunoparesis with hypogammaglobulinemia but I only have 5% plasma and lymphoplasma involvement according to the last BMB and my IgM has remained stable - somewhat. It has fluctuated between 900 and 1400 and back down. Not enough for the doctors to consider chemo yet.

@tracypage hi Tracy. It’s so weird how different drugs impact people differently. I suppose it’s because our blood chemistry and everything else is unique. I was prescribed duloxetine (cymbalta) and didn’t like it at all. It made me feel somehow outside of myself. I was a clinical social worker who worked in mental health and in one form or another for many years. I feel like I owe an apology to everyone who was prescribed psychiatric medications and stop taking them because they made them feel funny. We sort of rolled our eyes, but the truth is out there.
I’m now taking pregabalin and although it does not eliminate all the pain, it helps tremendously. It definitely abates that sharp, unexpected and unexplained pain that I get in my feet and toes in particular. That was brutal.
I had to work with my neurologist to come up with a solution that was right for me, but I am giggling a little because he told me that when I got off the Cymbalta, I would gain weight.
Go figure.
I’d be curious as to how this works out for you if you’d let me know?

@pmm Thank you! I tried pregabalin a few years ago before this is where it is now, but gained 7 pounds in 7 days and they quickly pulled me off it. My doc says it is really rare for the weight gain while using cymbalta but it is out there. We know Lyrica is out from the past experience. He has sent me a low dose of gabapentin just to see how react but I am trying to not take it until I am off Cymbalta. Gabapentin is a pregabalin too though so neither he nor I are hopeful.

I had been on tricyclic antidepressants when I was having internal shingles maybe a decade ago and my experience was like yours— I could not function and I was drowsy all the time. So I understand what you are saying. I didn’t notice that with cymbalta but I think you are correct, we are messing with blood chemistry and everyone is different.

Our latest idea is they have me on zepbound to help get this 40 pounds back off. I lost 10 just coming off the cymbalta, 30 more to go. And then maybe try combining a low dose of cymbalta with the zepbound. Cymbalta really was the most thorough relief I have had but while my weight went up, my A1C went to 5.9 and my triglycerides soared. My GP is afraid I will end up diabetic if I keep gaining like that.

@kayabbott It is also associated with pain, I have tremendous pain. I think it differs depending on you and the cause.

The neurologist said mine is caused by high IgM but is reacting like a small fiber neuropathy. When she described the pain I was likely feeling, she bowled me over with the accuracy.