Does anyone have neuropathy related to MGUS?

Because I am IgM, the doctors think it is most likely that my PN is due to the MGUS.

@circawdm, do you have pain and numbness with your neuropathy or one or the other? What helps?

Numbness, burning sometimes in toes, rarely serious pain. I do many things. Worse at night bedtime. If I think it will prevent getting to sleep well, I take 2 Extra Strength Tylenol.

Other things I do that really help:

1. Epsom Salt warm water foot soaks 2x a day. They are full of magnesium which is good for this. I walk slowly. Keeping the circulation up is a MUST. I have a vibration pad I use on my feet daily 1-2x for 15 minutes. I have an EMS/TENS stimulator for my feet (Revitalize on Amazon) I use daily. Foot stretches. Physical therapy 1x a week.

2. Clean, anti-inflammatory diet. NO sugar, no red meat. VERY IMPORTANT! Especially if you are diabetic (which I am not).
3. Supplements and diet: D3, C, Olive oil, broccoli, blueberries, colorful fruits, and veggies. Garlic- fresh or in pills. Tumeric in pills. Omega 3 Fatty Acid capsules 2500 mg/day. **VERY IMPORTANT.**
4. I meditate or do relaxation exercises 1-2 x a day. STRESS causes inflammation to rise!
5. I get 7-8 hours of sleep every night. I do not eat after 8 PM. NO alcohol! Alcohol and sugar really make PN flare for most people. I see my neurologist every 4-5 months to check to make sure things are stable. I have been pretty stable since last July.

That's about it. It means changing your entire way of living and eating for most people, but it has been proven to help from a little to a lot. No medications like Gabapentin, Lyrica, or Cymbalta. They just mask the symptoms and do NOT get to the cause. And regardless of whether you have issues in your feet, hands, arms, legs, or all, inflammation and poor circulation are bound to make them much worse!

Hi @circawdm, Thanks for sharing some really good suggestions and what has helped with your neuropathy symptoms. I just wanted to let you know about another site that has some great advice on living well with neuropathy if you haven't already seen it.
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/.

@circawdm Like you, I am IgM, and deal with neuropathy in m left left leg/foot. There is basically no feeling down the outside and wrapping around under my foot. I use a cane to ensure my balance.
Ginger

Hi Ginger,

I am sorry. I hope you are at least doing some of the things either at home or with a professional that can help you with symptoms, and possible keep things from progressing of from getting severe nerve damage?

1. Diet at home and when out
2. At least some of the supplements I mentioned.
3. Walking or at-home foot baths and other things that can improve leg/foot circulation (including wearing compression socks) 15-20 pressure.
4. Physical therapy.
5. Comprehensive nerve evaluation by a qualified neurologist to see exactly what you have, how bad it is, etc.
6. Good footwear that makes walking safer and easier.

Etc. If you have any questions about diagnosis and treatments using diet, supplements, and other things feel free to send me a message. If you don't do as much to prevent progression as you possibly can it can get so much worse and have a huge impact on your quality of life of course. 🙂

The numbness I have started on my left cheek and is on the last three toes of my left foot. Originally I was sent to a neurologist who ran several scans, spinal tap, EMGs and blood work only to find MGUS and have been followed by a hematologist for about 25 years. The numbness does seem to be part of the MGUS and I have had it so long that I barely notice it anymore except when I am consciously thinking about it. I do not take any supplements for it.

Hi Agatha,

I am so happy you are asymptomatic now! It would be indeed rare for someone with MGUS related PN to have the symptoms to be so mild that without intervention and/or lifestyle changes over time, you do not notice them or that they have not gotten worse. You did not say what your EMG or nerve conduction tests revealed, but whatever they said, I am happy you are one of few people I have ever read about or known with MGUS-caused neuropathy who, over a long number of years had their symptoms stay the same or where the symptoms actually dissipated such as they were barely noticeable.

There are always exceptions to the rule and everyone's body is different, but congratulations!

@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

@circawdm I was originally being tested for MS and all tests were either negative or inconclusive. The numbness (PN) has progressed from 2 toes to 3 and more of my cheek is involved, but overall it is tolerable and I guess after this long, I am just used to it.

Thanks for your reply.