Does anyone else have MGUS?

Posted by mjlandin @mjlandin, Jun 4, 2022

I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?

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Profile picture for wheegie @wheegie

I've been diagnosed with MGUS and also taking gabapentin. I'm finding I have extreme fatigue after about an hour of a dose. Would you please explain to me what your side effects were? I told my PCP that I thought it was the gaba that was causing my sleepiness and he said he had never heard of that. Thanks!

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@wheegie
It is so incredible that doctors are not aware of common side effects. Gabapentin is prescribed off label for sleep-I know because it was prescribed for my insomnia and it did help me sleep at night. It just made me so spaced out and a little dizzy all the next morning that I had to discontinue it. I was on it for a month or more and those side effects never got better. I’m not surprised you felt extremely fatigued after taking a dose.

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Yea I was diagnosed A few years ago . And had mastectomy 7/23 . was told a few minutes ago I have an Mspike.

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Profile picture for Patty, Volunteer Mentor @pmm

@maddie2023 I feel you. I did not like gabapentin either. I am taking 200mg daily of pregabalin now. No side effects but I’m not sure it’s doing much to change the narrative.
I keep moving. The pain that I get in my toes is sometimes pretty extreme. I just push through it and keep on keeping on. At 72, I think being able to do that is going to be a pretty good adaptive life strategy.
Water aerobics has helped a lot of my friends who are arthritic and although it’s kind of a pain because we don’t have a heated pool in my community, I think I’m going to drive to use the heated pool in a nearby community.
I’ve also been doing physical therapy due to a fall and that has helped me tremendously by strengthening my core. I guess Medicare has a lifetime cap on physical therapy and I am reaching that maximum. I think that’s ridiculous because physical therapy can assist in keeping people out of nursing homes and help them live more independently even with physical limitations. I have my last session tomorrow and after that I plan to replicate what I’ve learned in physical therapy at the senior citizen center and work out on their machines and with free weights
I hope you can find some relief. If you find something that gives you good results, please do post them.

Jump to this post

I've been diagnosed with MGUS and also taking gabapentin. I'm finding I have extreme fatigue after about an hour of a dose. Would you please explain to me what your side effects were? I told my PCP that I thought it was the gaba that was causing my sleepiness and he said he had never heard of that. Thanks!

REPLY
Profile picture for jdm02 @jdm02

Hi, I was dx. Oct. 24 with MGUS. As of last May my M spike was .08 & I had 1 lambda showing itself. I asked if we could delay the entire body bone X-rays and my Hematologist agreed unless my numbers changed significantly. (I didn’t want the xtra radiation ☢️ yet)
My next blood evaluation is Nov.
As with all of us with MGUS, it’s a waiting game. I was told at my age 68 that I would probably die of something else. Comforting huh?
I have a friend w/MM and she had gone thru terrible things but is still surviving after 12 yrs. My heart goes out to all suffering anything in relation to our diagnosis’s MGUS, SMM or MM. Bless all of us. Perseverance is our motto!

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@jdm02 Praying that all goes well for you in November. My Dr told me that sometimes we find out incidentally, and that so many cases don't worsen or develop into anything. Let's hope and like you said God bless us all!

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Profile picture for fredes @fredes

I was diagnosed jan2025.
IgM 15g/l
Flc kappa 6. It has risen to 7 in 6 months.
Is this signifcant ?

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@fredes - yes it was. thank you. Take care of yourself and always get checked.

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Profile picture for hsminc @hsminc

Yes I have MGUS; was diagnosed 23 years ago in 2002. It is truly a waiting game.
While my M spike and FLC lambda have gone up, they are reasonably stable. My previous Mayo hematologist (who retired) wanted bloods drawn every 3 months. My current hematologist is more relaxed about all of this and I have blood tests every six months now. After 23 years I do not get nervous anymore waiting for results,
I guess time will tell. I do not have symptoms that I know of.

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@hsminc Happy to see you've been stable for some time. I'm new to this so next month makes 1 year for me. Thank you for sharing your story....

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Profile picture for Patty, Volunteer Mentor @pmm

@maddie2023 I feel you. I did not like gabapentin either. I am taking 200mg daily of pregabalin now. No side effects but I’m not sure it’s doing much to change the narrative.
I keep moving. The pain that I get in my toes is sometimes pretty extreme. I just push through it and keep on keeping on. At 72, I think being able to do that is going to be a pretty good adaptive life strategy.
Water aerobics has helped a lot of my friends who are arthritic and although it’s kind of a pain because we don’t have a heated pool in my community, I think I’m going to drive to use the heated pool in a nearby community.
I’ve also been doing physical therapy due to a fall and that has helped me tremendously by strengthening my core. I guess Medicare has a lifetime cap on physical therapy and I am reaching that maximum. I think that’s ridiculous because physical therapy can assist in keeping people out of nursing homes and help them live more independently even with physical limitations. I have my last session tomorrow and after that I plan to replicate what I’ve learned in physical therapy at the senior citizen center and work out on their machines and with free weights
I hope you can find some relief. If you find something that gives you good results, please do post them.

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@pmmpmm - thank you so much for all the helpful information. I find that moving around is my best bet too. The night time comes around, and then oh well, it's a gamble on what type of night it's going to be. I find relief in the pool also. I would definitely get to that heated pool if I were you. I'm trying to find out about physical therapy myself. I'll take anything I can do for even if just one day of comfort....

In the meantime I have a foot massager, which has a vibration mode. I use it once (sometimes twice) a day. It gets the circulation going and improves nerve function.

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Profile picture for maddie2233 @maddie2233

I've been told to just keep moving around and walking (which I started doing around my neighborhood). Purchased a good pair of NB sneakers which are pretty much cushioned and make it easier for me to walk in them. I find sitting still just aggravates things so I try to not sit around that much. Good luck to you in February. Who knows maybe someday they'll come up with some solution. Right now my Dr pushes the meds. No thank you, I don't like the feeling I got after taking gabapentin for 4 days. That was enough to convince me I had to find other remedies....

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@maddie2023 I feel you. I did not like gabapentin either. I am taking 200mg daily of pregabalin now. No side effects but I’m not sure it’s doing much to change the narrative.
I keep moving. The pain that I get in my toes is sometimes pretty extreme. I just push through it and keep on keeping on. At 72, I think being able to do that is going to be a pretty good adaptive life strategy.
Water aerobics has helped a lot of my friends who are arthritic and although it’s kind of a pain because we don’t have a heated pool in my community, I think I’m going to drive to use the heated pool in a nearby community.
I’ve also been doing physical therapy due to a fall and that has helped me tremendously by strengthening my core. I guess Medicare has a lifetime cap on physical therapy and I am reaching that maximum. I think that’s ridiculous because physical therapy can assist in keeping people out of nursing homes and help them live more independently even with physical limitations. I have my last session tomorrow and after that I plan to replicate what I’ve learned in physical therapy at the senior citizen center and work out on their machines and with free weights
I hope you can find some relief. If you find something that gives you good results, please do post them.

REPLY

Yes I have MGUS; was diagnosed 23 years ago in 2002. It is truly a waiting game.
While my M spike and FLC lambda have gone up, they are reasonably stable. My previous Mayo hematologist (who retired) wanted bloods drawn every 3 months. My current hematologist is more relaxed about all of this and I have blood tests every six months now. After 23 years I do not get nervous anymore waiting for results,
I guess time will tell. I do not have symptoms that I know of.

REPLY

I was diagnosed jan2025.
IgM 15g/l
Flc kappa 6. It has risen to 7 in 6 months.
Is this signifcant ?

REPLY
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