Does anyone have neuropathy related to MGUS?

@positivethinking Yes. I was first diagnosed with neuropathy, then MGUS and now Waldenstrom macroglobulinemia, say that three times. Whew.

@circawdm I assumed you had cancer or had MGUS since the topic included MGUS.

But not all neuropathy works the same way and what worked for you is wonderful for you and I am glad you are in less pain and able to manage it.

I like the red light socks idea. Right now I am recovering from a 6 hour surgery and that feeling of imaginary bed sores is driving me nuts and the oversensitivity in my skin. The neurologist described this as more similar to short fiber neuropathy even though the cause is high IgM.

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.

After 20 years of numbness and some pain lately with PN, I got tested and was diagnosed with IgM MGUS with MAG antibodies (over 64 times the normal range (Mine: >1:102400)). They said this is the CAUSE of my PN. Local Doc referred me to MAYO clinic in PHX for evaluation.

In a conversation with CLAUDE (AI), he said there are infusion treatments that may help reverse the PN. Rituximab is a first line treatment.

Anyone have any experience with this? Did it work?

@m118 I am there with you. I am positive for the MYD88 gene and am starting to have symptoms but the bone marrow infiltration was still fairly low last summer. The neuropathy part sucks though…. sleeping through the night has not been easy.

And I still can’t say macroglobulinemia even though the oncologist said it very slowly for me. Or hypogammaglobulinemia. Seriously, can’t they find easier words?

@allessio77
I’ve had PN for several years with pain increasing. Diagnosed with myelofibrosis, I began Hydrea 18 months ago. Also diagnosed with Waldenstroms lymphoma just started with Retuximab because doctor said that would decrease the PN pain. Only two infusions so far but I’m hoping that helps because sleeping has become a challenge from the PN. I’m hoping to see results down the road. 🙏🏽