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Does anyone else have MGUS?

Blood Cancers & Disorders | Last Active: 8 hours ago | Replies (789)
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@michaelah

Hi @laurinea, I understand what you are going through. My neuropathy started 18 months ago and diagnosed MGUS. Also found waldenstoms but my oncologist hadn't seen neuropathy this bad for WM so my neurologist ordered an Anti-MAG blood test, I was > 70000, so they put me on high dose prednisone (3 months so far). My neuropathy is improving - only below the knees now. So, it might be worth asking for this test. the more knowledge the better.

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Replies to "Hi @laurinea, I understand what you are going through. My neuropathy started 18 months ago and..."
laurinea | @laurinea | Oct 15, 2023

I will be asking a lot of questions when I finally get to see someone. So far have only been give my diagnosis over the phone by the referring Dr (who knows little about MGUS) and the head nurse (she got special permission to tell me) at oncology as the Dr who did my bone marrow hadn't put my notes into the computer yet and was away when I rang.

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