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MGUS: Please, let me know I not alone
i Have gotten desperate enough to try to get an appointment at Mayo in minnasota for mgus. anyone out there that is also been diagnosed with this time bomb.
I am also suffering with anemia and pvc's and a lot of pain. please let me know that I am not alone. bonne
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Thanks! I was diagnosed with mgus last fall and I feel so much stress and depression wondering what the next step will be. I am relieved to her about someone who has not experienced a next step. Stay safe
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1 ReactionChemo is another big cause.
I was diagnosed with IgG MGUS prompted by my PN. After extensive blood and EMG tests, both the Hematologist and Neurologies don’t suspect the PN to be related to my MGUS. PN is more commonly associated with IgM MGUS than IgG or IgA as you can find in the literature.
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1 ReactionGreetings! I’m sorry you had to join us but I’m glad you did. I think it’s important to keep this in perspective. MGUS progression to SMM or MM is not a foregone conclusion. A very small percentage of people with MGUS progress to the dreaded multiple myeloma. Maybe because it’s often diagnosed later in a persons life, they are most likely to die of something else besides multiple myeloma.
Also, treatment opportunity for multiple myeloma has really advanced over the past decade.
I am grateful to my healthcare team that day are able to monitor this condition and therefore pay more attention to other potential threats to my health.
I have to check myself that I don’t attribute all unrelated symptoms to MGUS. It helps to remember how rare progression really is.
Keep the faith.
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5 ReactionsThank you .
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3 ReactionsHi Neskue,
Yes I have peripheral neuropathy in my feet. I feel I may be getting it in my wrists. Although, maybe from my neck…jeesh…lol
What is BCMA?
@anng53 Welcome to Mayo Clinic Connect, Ann!
You're right that peripheral neuropathy can indeed be related to other conditions. Sometimes, it seems that if there is already a diagnosis of something that may relate to a condition, a doctor may lump that in with it. It can be much less work to do it like that, rather than checking to see what it may be really to. At least, that has been my experience in the past.
My neuropathy started about the same time I went from smoldering myeloma to multiple myeloma. It is still a situation I deal with, and will probably not be going away anytime soon. Dang it! For me, it affects my left leg from knee down, and my hands.
Ginger
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2 ReactionsI have had MGUS since about 2009, with no conversion to Multiple Myeloma. I had high calcium, but that proved to be due to high parathyroid hormone. Right now I have borderline anemia and a bunch of other stuff that may or may not be related.
I have had peripheral neuropathy, since about the same time period, but I also have diabetes. Neuropathy can be caused by several things, so it may be unrelated to MGUS. If your neuropathy is related to MGUS there would probably be other symptoms, and it probably would not be called MGUS any longer.
I have been around the bend with this diagnosis multiple times. I have searched the internet and worried unnecessarily. I am up for another round of blood work and bone marrow biopsy, just to stay up on things. Now I don't worry until something definite is found.
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3 ReactionsYou are not alone! I have been diagnosed with Mgus for about 2 years. I also have peripheral neuropathy which one doctor said was associated with Mgus . I would like to know if anyone else has a neuropathy associated with Mgus diagnosis .