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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I guess I need a neurologist. Too many “ologists” in my contacts.
Does she or he do anything to treat it and is treatment effective?
Hope everyone has a good weekend.
Patty

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I ran across a few MGUS neuropathy articles that I thought might be helpful on the Foundation for Peripheral Neuropathy.

--- Study Protocol on IgM Anti-Mag Neuropathy Released: https://www.foundationforpn.org/study-protocol-on-igm-anti-mag-neuropathy-released/
--- Anti-MAG Peripheral Neuropathy: Q&A: https://www.foundationforpn.org/anti-mag-questions/
--- Webinar: Anti-MAG Peripheral Neuropathy: An Overview with Richard Lewis, MD:
https://www.foundationforpn.org/webinar-anti-mag-peripheral-neuropathy-an-overview-with-richard-lewis-md/

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@pmm

I guess I need a neurologist. Too many “ologists” in my contacts.
Does she or he do anything to treat it and is treatment effective?
Hope everyone has a good weekend.
Patty

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My Neurologist sent me to Hematologist Oncologist. Basically released me but I can go back if something needed. Read on one of these post that someone was told the excess protein collects in feet and reason for the neuropathy symptoms. Neurologist ruled out neuropathy when he did his tests. I guess is neuropathy LIKE symptoms.

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@johnbishop

I ran across a few MGUS neuropathy articles that I thought might be helpful on the Foundation for Peripheral Neuropathy.

--- Study Protocol on IgM Anti-Mag Neuropathy Released: https://www.foundationforpn.org/study-protocol-on-igm-anti-mag-neuropathy-released/
--- Anti-MAG Peripheral Neuropathy: Q&A: https://www.foundationforpn.org/anti-mag-questions/
--- Webinar: Anti-MAG Peripheral Neuropathy: An Overview with Richard Lewis, MD:
https://www.foundationforpn.org/webinar-anti-mag-peripheral-neuropathy-an-overview-with-richard-lewis-md/

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Thank you, another diagnosis! I have high IGM 339 and rising. My PN started when IGM level was normal.

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@tlgreen12605

My Neurologist sent me to Hematologist Oncologist. Basically released me but I can go back if something needed. Read on one of these post that someone was told the excess protein collects in feet and reason for the neuropathy symptoms. Neurologist ruled out neuropathy when he did his tests. I guess is neuropathy LIKE symptoms.

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That’s what I’m wondering about. I’d like to know the cause of the neuropathy. I find it interesting that medical people just attribute it to Diabetes and shrug. At least mine have.
I think I’ll become more assertive about it. Sometimes one has to wear them down.
Patty

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We are our own advocates! You go girl!

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@tlgreen12605

My Neurologist sent me to Hematologist Oncologist. Basically released me but I can go back if something needed. Read on one of these post that someone was told the excess protein collects in feet and reason for the neuropathy symptoms. Neurologist ruled out neuropathy when he did his tests. I guess is neuropathy LIKE symptoms.

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That’s a curious response to MGUS (the release from the HEM/ONC doc) as the whole “watch and wait” MGUS response requires periodic blood draws to watch for progression.
Weird. I might be casting a net further for a second opinion.
My HEM/ONC doc poo poo’d an association between neuropathy and MGUS. It is the health concern with the greatest impact at this point in my life as it restricts my activities. So I’ll keep after it.
Patty

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@pmm

That’s a curious response to MGUS (the release from the HEM/ONC doc) as the whole “watch and wait” MGUS response requires periodic blood draws to watch for progression.
Weird. I might be casting a net further for a second opinion.
My HEM/ONC doc poo poo’d an association between neuropathy and MGUS. It is the health concern with the greatest impact at this point in my life as it restricts my activities. So I’ll keep after it.
Patty

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Always good to get second opinion

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Or even a third or fourth I have MGUS with many symptoms. Some doctors say it's not the MGUS. Some say it's possible I get no clear answers. I have severe neuropathy. Extreme fatigue. Trouble with low blood pressure and can't control my blood sugar . And no answers

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@cgerwig66

Or even a third or fourth I have MGUS with many symptoms. Some doctors say it's not the MGUS. Some say it's possible I get no clear answers. I have severe neuropathy. Extreme fatigue. Trouble with low blood pressure and can't control my blood sugar . And no answers

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Clarity would be such a blessing.

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