Does anyone have neuropathy related to MGUS?

Posted by quarksunite @quarksunite, Feb 18 6:21pm

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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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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@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 numbness. I have had the numbness for about three years now. It is not complete. I can still feel parts of the bottom of my feet but I feel very unsteady and have to walk slowly. The neurologist I have been seeing is sending me to a hematologist. I exercise but it does not seem to help. What supplements do you take that you believe helps you. I could ask about them when I see the hematologist. What causes your numbness?

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@quarksunite

Yes MGUS can cause numbness. I have had the numbness for about three years now. It is not complete. I can still feel parts of the bottom of my feet but I feel very unsteady and have to walk slowly. The neurologist I have been seeing is sending me to a hematologist. I exercise but it does not seem to help. What supplements do you take that you believe helps you. I could ask about them when I see the hematologist. What causes your numbness?

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I take most of the supplements listed on the link in my previous post on the Foundation for Peripheral Neuropathy but order them through a group I found on Facebook. Here's a discussion on the supplements.
— Have you tried the new Protocol 525 product for neuropathy relief?:
https://connect.mayoclinic.org/discussion/have-you-tried-the-new-protocol-525-product-for-neuropathy-relief/.
Here is a list of the supplements you can share with your doctor:
Protocol formula daily: B1 50mg, B2 50mg, B3 20mg, B7 20,000mcg, Flaxseed Oil 2000mg, na R ALA 1200mg, D3 4000 IU, Chelated Magnesium 200 mg, Methylcobalamin sublingual B12 5000mcg, K2 200mcg, Acetal L Carnitine 1000mg, 3Tbs Organic Hemp Seed Oil

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@johnbishop

I take most of the supplements listed on the link in my previous post on the Foundation for Peripheral Neuropathy but order them through a group I found on Facebook. Here's a discussion on the supplements.
— Have you tried the new Protocol 525 product for neuropathy relief?:
https://connect.mayoclinic.org/discussion/have-you-tried-the-new-protocol-525-product-for-neuropathy-relief/.
Here is a list of the supplements you can share with your doctor:
Protocol formula daily: B1 50mg, B2 50mg, B3 20mg, B7 20,000mcg, Flaxseed Oil 2000mg, na R ALA 1200mg, D3 4000 IU, Chelated Magnesium 200 mg, Methylcobalamin sublingual B12 5000mcg, K2 200mcg, Acetal L Carnitine 1000mg, 3Tbs Organic Hemp Seed Oil

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I have not tried Protocol 525. I will discuss it and all the supplements you listed when I meet with the hematologist. Thank you for replying.

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@dbeshears Thank you for the hug.

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@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?

Jump to this post

@quarksunite I recently read a letter from the VA that my friends husband received. MGUS is Monoclonal gammopathy of undetermined significance. My husband is a veteran and he did not receive this letter my friend just showed it to me because my husband is a veteran of the military. My husband had been at one of the places they mentioned but not for a long period of time. The letter has been sent out to veteran's who were in the military during certain times and they put down certain places that may apply to them. In August of 2022 Biden signed the PACT Act. PACT stands for Promise to Address Comprehensive Toxics Act of 2022. The law increases eligibility to benefits by expanding lists of locations, timeframes, and (presumptive) conditions related to herbicide exposure. This is just something that I read. If you are a veteran and you have this you can go to http://www.publichealth.va.gov/exposures/agentorange. I just saw this and don't know if this applies to anyone or not. There might possibly be something of interest there. I did not go further and read anything else. I had to look up MGUS because I didn't know about it either. MGUS was one condition they mentioned and high blood pressure was the other.

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@rnlorena

@quarksunite I recently read a letter from the VA that my friends husband received. MGUS is Monoclonal gammopathy of undetermined significance. My husband is a veteran and he did not receive this letter my friend just showed it to me because my husband is a veteran of the military. My husband had been at one of the places they mentioned but not for a long period of time. The letter has been sent out to veteran's who were in the military during certain times and they put down certain places that may apply to them. In August of 2022 Biden signed the PACT Act. PACT stands for Promise to Address Comprehensive Toxics Act of 2022. The law increases eligibility to benefits by expanding lists of locations, timeframes, and (presumptive) conditions related to herbicide exposure. This is just something that I read. If you are a veteran and you have this you can go to http://www.publichealth.va.gov/exposures/agentorange. I just saw this and don't know if this applies to anyone or not. There might possibly be something of interest there. I did not go further and read anything else. I had to look up MGUS because I didn't know about it either. MGUS was one condition they mentioned and high blood pressure was the other.

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Thank you for the message. However, I am not a veteran. I have lived my life in the westside of Los Angeles and have never had exposure to toxic substances that I know of. But thanks again.

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Does anyone have neuropathy (numbness only) from MGUS (monoclonal gammopathy of undetermined or unspecified significance)? If so what treatments have you tried? Please tell me if they were successful or unsuccessful. Thank you.

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@quarksunite

Does anyone have neuropathy (numbness only) from MGUS (monoclonal gammopathy of undetermined or unspecified significance)? If so what treatments have you tried? Please tell me if they were successful or unsuccessful. Thank you.

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Hi @quarksunite, I moved your most recent question about neuropathy related to MGUS to your previous question and added it to the Blood Cancers support group as well as the Neuropathy support group.

I'm tagging members like @neskue3712 @circawdm @ialogic @gingerw who have both neuropathy and MGUS, although I'm not sure their neuropathy is related to MGUS in all cases.

You may also be interested in this related discussion:
– Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/

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My mother had it. Neurologist knew nothing about it and hematologist didn’t know about neuropathy link. I developed ts Hds antibody related to small fiber neuropathy. You should see a specialist in neuropathy.

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