1. < Blood Cancers & Disorders

Does anyone have neuropathy related to MGUS?

Posted by quarksunite @quarksunite, Feb 18, 2023

I have neuropathy in my feet and lower legs caused by MGUS the docs tell me, I do not have pain - just numbness. Does anyone know of any supplements or drugs that help alleviate the numbness?

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Clifford Gerwig | @cgerwig66 | May 10, 2023
In reply to @deborahjb "I'm sorry you are experiencing this @quarksunite. I too have MGUS and numbness, which my hematologist..." + (show)
@deborahjb

I'm sorry you are experiencing this @quarksunite. I too have MGUS and numbness, which my hematologist told me was probably not caused by my MGUS. But I think it's too much of a coincidence to not be linked. I'd be interested to hear if there is any supplement, drug or therapy that alleviates it too.

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I too haver severe neuropathy and carpal tunnel. There are many people with MGUS with neuropathy also I believe it's more than 20% . I believe there is much evidence linking it to MGUS

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Patty, Volunteer Mentor | @pmm | May 10, 2023
In reply to @tlgreen12605 "Patty, forgot to mention, like the other comment, I am on gabapentin and it has helped..." + (show)
@tlgreen12605

Patty, forgot to mention, like the other comment, I am on gabapentin and it has helped some with the pain, but not the numbness. I am up to 300 two in am and 2 in pm. They said I can go up but figure I would try to tolerate as much as can at this level in case needed to go higher in future. Blessings, Teri

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Thank you. I will check that out. PMM

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journey23 | @journey23 | May 11, 2023

A Neurologist diagnosed my neuropathy as polyneuropathy and he requested a light chains blood test for me. My ratio was high so that's how my MGUS diagnosis came about. I go every 6 months for bloodwork. I am taking Amitriptyline at bedtime so I can sleep otherwise the neuropathy in my feet would drive me crazy.

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Clifford Gerwig | @cgerwig66 | May 12, 2023

They subscribe gabapentin for me helps me sleep dose nothing for my nerve pain during the day and is very addictive. I believe the pharmacological puss it a lot. You think I should try Amitriptyline?

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Patty, Volunteer Mentor | @pmm | May 13, 2023
In reply to @cgerwig66 "They subscribe gabapentin for me helps me sleep dose nothing for my nerve pain during the..." + (show)
@cgerwig66

They subscribe gabapentin for me helps me sleep dose nothing for my nerve pain during the day and is very addictive. I believe the pharmacological puss it a lot. You think I should try Amitriptyline?

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It may just be coincidental but gabapentin was prescribed for me and I almost immediately developed tingling in my fingers.
Of course I Googled (which is ill advised), and found a study in which this symptom was documented in a significant number of women taking gabapentin. The tingling diminished significantly when I stopped taking it so I have not resumed.
It’s frustrating, this neuropathy.

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Ginger, Volunteer Mentor | @gingerw | May 13, 2023
In reply to @pmm "It may just be coincidental but gabapentin was prescribed for me and I almost immediately developed..." + (show)
@pmm

It may just be coincidental but gabapentin was prescribed for me and I almost immediately developed tingling in my fingers.
Of course I Googled (which is ill advised), and found a study in which this symptom was documented in a significant number of women taking gabapentin. The tingling diminished significantly when I stopped taking it so I have not resumed.
It’s frustrating, this neuropathy.

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@pmm My oncologist also prescribed gabapentin. Unfortunately, due to my end stage renal failure, the recommended dosing for gabapentin w/ ESRD was lower than what would be therapeutic. So, I titrated off it after a month, since it was doing no good for me. There never was any relief found, so it remains "something to deal with every day". Luckily it is mostly in my left leg/foot and I can movitate around with my cane.
Ginger

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Patty, Volunteer Mentor | @pmm | May 13, 2023
In reply to @gingerw "@pmm My oncologist also prescribed gabapentin. Unfortunately, due to my end stage renal failure, the recommended..." + (show)
@gingerw

@pmm My oncologist also prescribed gabapentin. Unfortunately, due to my end stage renal failure, the recommended dosing for gabapentin w/ ESRD was lower than what would be therapeutic. So, I titrated off it after a month, since it was doing no good for me. There never was any relief found, so it remains "something to deal with every day". Luckily it is mostly in my left leg/foot and I can movitate around with my cane.
Ginger

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I hate that for you. And for me. So uncomfortable and painful. I am just going to learn to adapt and accept that it’s one of the “new normal” conditions of life.
Have a good weekend!
Patty

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Clifford Gerwig | @cgerwig66 | May 13, 2023
In reply to @pmm "It may just be coincidental but gabapentin was prescribed for me and I almost immediately developed..." + (show)
@pmm

It may just be coincidental but gabapentin was prescribed for me and I almost immediately developed tingling in my fingers.
Of course I Googled (which is ill advised), and found a study in which this symptom was documented in a significant number of women taking gabapentin. The tingling diminished significantly when I stopped taking it so I have not resumed.
It’s frustrating, this neuropathy.

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Yes it's over a year now and no relief.

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Mentor
Patty, Volunteer Mentor | @pmm | May 13, 2023

I’m so sorry.

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agatha679 | @agatha679 | May 19, 2023
In reply to @johnbishop "Hello @quarksunite, Welcome to Connect. I've never heard of MGUS causing neuropathy. I also only have..." + (show)
@johnbishop

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?

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Yes MGUS can cause neuropathy. Mine is just numbness but my neurologist said it's due to a buildup of those M proteins in the blood that cause the numbness.

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