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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Mentor
Ginger, Volunteer Mentor | @gingerw | Jan 11, 2023
In reply to @eulo "Thank you Ginger. You are one great person, I was reading yours posts several month ago..." + (show)
@eulo

Thank you Ginger. You are one great person, I was reading yours posts several month ago before post yesterday.
My wife is my life, we have 70 years old and 54 together, 4 engaged and 50 married. Now she are sik and I can't do anything. Every day, every hours I see her face, hands and legs, I'm destroyed too.
Even now the hematologist say that her do not need QuimioT.
Thank you Ginger 🙏

Jump to this post

@eulo Thank you for your kind words!

Something your wife might try, is to use a good cream on her hands and feet, massaging it into the skin gently. Or you could do it for her, a real treat for you both. It will show her even more how you care for her, and it will feel very comforting. Gentle massage of the muscles can do a lot of good. Keep moving and exercising, that seems to be a key. Often we hear when we stop, is when more problems happen.

You are supporting your wife, and helping her look for answers. That is a big thing, so please do not doubt you are helping her! Until her situation changes away from MGUS, I can understand why her doctor says "no chemotherapy at this time". The doctor will continue to monitor her, and watch for signs if she gets worse. Remember, most people live with MGUS for many years without any problems. Have you asked her doctor if the cramps are related to the MGUS, or part of something else?
Ginger

REPLY
eulo | @eulo | Jan 11, 2023

Thank you Ginger. You are one great person, I was reading yours posts several month ago before post yesterday.
My wife is my life, we have 70 years old and 54 together, 4 engaged and 50 married. Now she are sik and I can't do anything. Every day, every hours I see her face, hands and legs, I'm destroyed too.
Even now the hematologist say that her do not need QuimioT.
Thank you Ginger 🙏
REPLY
1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Jan 10, 2023
In reply to @eulo "Hello Ginger, I'm new here, my wife have MGUS for three years and several problems in..." + (show)
@eulo

Hello Ginger,
I'm new here, my wife have MGUS for three years and several problems in her hands and hard pain.
What problems do you have in yours hands?
Sorry for my English
Best regards.

Jump to this post

@eulo Welcome to Mayo Clinic Connect. It is great you are seeking information for your wife's situation.

Remember, people can have several different conditions affecting us at the same time, and it might be difficult to separate what it may belong to. For me, I get severe cramps in my hands from time to time, and often comes when I am doing fine motor movements with my hands. When that happens, getting my hands warm often helps alot.
Ginger

REPLY
eulo | @eulo | Jan 10, 2023
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

Jump to this post

Hello Ginger,
I'm new here, my wife have MGUS for three years and several problems in her hands and hard pain.
What problems do you have in yours hands?
Sorry for my English
Best regards.

REPLY
1 reply
gilash1965 | @gilash1965 | Jan 6, 2023
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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All the pains and all the problems came from the moment of the diagnosis, there is an extensive psychological aspect here that affects the brain that transmits pains, currents and more

REPLY
Kay Rovik | @anniemaggie | Dec 2, 2022
In reply to @anniemaggie "Follow your doctors recommendations and you should be ok. I wouldn't get so scared, but I..." + (show)
@anniemaggie

Follow your doctors recommendations and you should be ok. I wouldn't get so scared, but I always look at life that it could be worse, like your child or a close friend. If you look at my profile you will see why I say this. I have had so much going on in my life. It could be worse, & there's nothing you can do about it.

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I remembered what my Dr said once, he said it isn't rare any more. Only because it is being diagnosed earlier and better.

REPLY
Kay Rovik | @anniemaggie | Nov 20, 2022
In reply to @pdyer134 "Thank you. My iron is also extremely low? Maybe correlation?" + (show)
@pdyer134

Thank you. My iron is also extremely low? Maybe correlation?

Jump to this post

Follow your doctors recommendations and you should be ok. I wouldn't get so scared, but I always look at life that it could be worse, like your child or a close friend. If you look at my profile you will see why I say this. I have had so much going on in my life. It could be worse, & there's nothing you can do about it.

REPLY
1 reply
pdyer134 | @pdyer134 | Nov 20, 2022
In reply to @anniemaggie "I have smoldering MGUS which was diagnosed on a blood test by accident in 2003. There..." + (show)
@anniemaggie

I have smoldering MGUS which was diagnosed on a blood test by accident in 2003. There really have been no changes. I started seeing the cancer Drs twice yearly depending where I lived, as I moved around. Some Drs want me in twice yearly, other's once. I also had to have an iron transfusion, as my ferritin got really low. So far all ok.

Jump to this post

Thank you. My iron is also extremely low? Maybe correlation?

REPLY
1 reply
Kay Rovik | @anniemaggie | Nov 20, 2022
In reply to @pdyer134 "I’ve had idiopathic neuropathy for 6 years which has progressed a lot as of late. I..." + (show)
@pdyer134

I’ve had idiopathic neuropathy for 6 years which has progressed a lot as of late. I decided to come to MAYO for a second opinion. When doing blood tests I came back for having MGUS. Everything I’m reading there appears to be a strong connection? I’m seeing neurologist on Tuesday.,

Jump to this post

I have smoldering MGUS which was diagnosed on a blood test by accident in 2003. There really have been no changes. I started seeing the cancer Drs twice yearly depending where I lived, as I moved around. Some Drs want me in twice yearly, other's once. I also had to have an iron transfusion, as my ferritin got really low. So far all ok.

REPLY
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