1. < Blood Cancers & Disorders

MGUS: Please, let me know I not alone

Posted by bonnie canby @bonniecanby, May 21, 2012

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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teedlum | @teedlum | Nov 7, 2022
In reply to @neskue3712 "You are not alone! I have been diagnosed with Mgus for about 2 years. I also..." + (show)
@neskue3712

You 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 .

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Hi 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

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neskue3712 | @neskue3712 | Nov 8, 2022
In reply to @anng53 "I have had MGUS since about 2009, with no conversion to Multiple Myeloma. I had high..." + (show)
@anng53

I 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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Thank you .

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Mentor
Patty, Volunteer Mentor | @pmm | Nov 8, 2022

Greetings! 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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ea1 | @ea1 | Nov 8, 2022
In reply to @neskue3712 "You are not alone! I have been diagnosed with Mgus for about 2 years. I also..." + (show)
@neskue3712

You 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 .

Jump to this post

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 reply
anng53 | @anng53 | Nov 8, 2022
In reply to @gingerw "@anng53 Welcome to Mayo Clinic Connect, Ann! You're right that peripheral neuropathy can indeed be related..." + (show)
@gingerw

@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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Chemo is another big cause.

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pcb | @pcb | Nov 9, 2022
In reply to @anng53 "I have had MGUS since about 2009, with no conversion to Multiple Myeloma. I had high..." + (show)
@anng53

I 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.

Jump to this post

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 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Nov 9, 2022
In reply to @pcb "Thanks! I was diagnosed with mgus last fall and I feel so much stress and depression..." + (show)
@pcb

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

Jump to this post

@pcb Welcome to Mayo Clinic Connect! When we get a diagnosis that may lead to additional issues, it is normal for our minds to run off and possibly create worst-case scenarios. Been there, done that! Please take a deep breath and relax.

I'm glad you have read posts here that show you many people go for a very long time with no advancement of disease. How often are you getting bloodwork to monitor your condition? Any questions you have for us?!
Ginger

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1 reply
pcb | @pcb | Nov 10, 2022
In reply to @gingerw "@pcb Welcome to Mayo Clinic Connect! When we get a diagnosis that may lead to additional..." + (show)
@gingerw

@pcb Welcome to Mayo Clinic Connect! When we get a diagnosis that may lead to additional issues, it is normal for our minds to run off and possibly create worst-case scenarios. Been there, done that! Please take a deep breath and relax.

I'm glad you have read posts here that show you many people go for a very long time with no advancement of disease. How often are you getting bloodwork to monitor your condition? Any questions you have for us?!
Ginger

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The blood work has been done every six months. My doctor is excellent but does not have the time to explain everything much less deal with my confusion and fears. I don’t know anyone else with mgus and have been doing research on my own so I’m relieved to have found this group. Thanks

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2 replies
Mentor
Patty, Volunteer Mentor | @pmm | Nov 10, 2022
In reply to @pcb "The blood work has been done every six months. My doctor is excellent but does not..." + (show)
@pcb

The blood work has been done every six months. My doctor is excellent but does not have the time to explain everything much less deal with my confusion and fears. I don’t know anyone else with mgus and have been doing research on my own so I’m relieved to have found this group. Thanks

Jump to this post

Doctors are busy. It is their job, however, to treat you. All of you. Anxiety can raise your white count and make you actually feel sick. Schedule some time for a consultation and write down all your questions in advance.
If your doc can’t spend that time with you ask him or her for a referral to another doctor.
I worked in a busy teaching hospital for 15 years and as a medical social worker I arranged for thousands of these conversations.
The mind-body thing is real. It is normal to feel anxious after getting this diagnosis. Even after a year+ I can still get a little crazy with the “what ifs.” When I feel my calm eroding I pull it back. Time with nature, friends, fun stuff I enjoy, music, exercise…(okay, not enough exercise)…projects at home, community involvement, cooking and when all else fails, talking to a therapist.
Just don’t sit with it and feel miserable.
As time goes on you relax more and it’s easier.
Hugs.
Patty

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1 reply
pcb | @pcb | Nov 10, 2022
In reply to @pmm "Doctors are busy. It is their job, however, to treat you. All of you. Anxiety can..." + (show)
@pmm

Doctors are busy. It is their job, however, to treat you. All of you. Anxiety can raise your white count and make you actually feel sick. Schedule some time for a consultation and write down all your questions in advance.
If your doc can’t spend that time with you ask him or her for a referral to another doctor.
I worked in a busy teaching hospital for 15 years and as a medical social worker I arranged for thousands of these conversations.
The mind-body thing is real. It is normal to feel anxious after getting this diagnosis. Even after a year+ I can still get a little crazy with the “what ifs.” When I feel my calm eroding I pull it back. Time with nature, friends, fun stuff I enjoy, music, exercise…(okay, not enough exercise)…projects at home, community involvement, cooking and when all else fails, talking to a therapist.
Just don’t sit with it and feel miserable.
As time goes on you relax more and it’s easier.
Hugs.
Patty

Jump to this post

Ha! I actually postponed my work meeting so that I could take a walk in the park. It is beautiful sunny fall day and the smell of the wet leaves is wonderful! Thank you for your kind response. Stay well

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