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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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maddie2233 | @maddie2233 | Sep 22 2:28pm
In reply to @jdm02 "Hi, I was dx. Oct. 24 with MGUS. As of last May my M spike was..." + (show)
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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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wheegie | @wheegie | Sep 23 10:49am
In reply to @pmm "@maddie2023 I feel you. I did not like gabapentin either. I am taking 200mg daily of..." + (show)
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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.

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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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2 replies
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mgus1 | @mgus1 | Sep 23 7:31pm

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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1oldsoul | @1oldsoul | Sep 24 2:42pm
In reply to @wheegie "I've been diagnosed with MGUS and also taking gabapentin. I'm finding I have extreme fatigue after..." + (show)
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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tsch | @tsch | Sep 24 2:45pm
In reply to @1oldsoul "@wheegie It is so incredible that doctors are not aware of common side effects. Gabapentin is..." + (show)
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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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@1oldsoul
I was given gabapentin when I had a herniated disc and had no side effects, so maybe people respond differently. I think I took for a month or so.

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wheegie | @wheegie | Sep 24 4:38pm
In reply to @1oldsoul "@wheegie It is so incredible that doctors are not aware of common side effects. Gabapentin is..." + (show)
Profile picture for 1oldsoul @1oldsoul

@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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@1oldsoul
That's exactly how I feel! I'm also dizzy and in a brain fog when I wake up in the mornings. When I take my first dose in the morning after about 1 hr, I'm sound asleep again. I'm slowly weaning myself off of it because honestly I can't think straight. I was prescribed 3 doses per day and I'm now down to 2. I plan to drop down to only 1 dose in the next few days. I've been warned not to stop taking cold turkey. I've been taking it for about 6 months.
Thank you for the response.

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bobweller | @bobweller | Sep 25 11:10am

Yes, a couple years ago I was tested after complaining about neuropathy pain in my feet after a second liver transplant. Apparently this test was run on me years ago when I was first being tested for my 1st liver transplant in 2000. There are a couple other things related to this diagnosis related to light cells. Ask you doctor about that. I now have a regular annual test starting up with a PA in the blood related diseases.

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quaglietta13 | @quaglietta13 | Sep 25 12:54pm
In reply to @wheegie "I've been diagnosed with MGUS and also taking gabapentin. I'm finding I have extreme fatigue after..." + (show)
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
I was prescribed gabapentin for joint pain.
What a horrible experience. I was wasted, fatigued and slept horribly.
I stopped after 3 days. Same story Doctor did not make me aware of any side effects.

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1 reply
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wheegie | @wheegie | Sep 25 3:38pm
In reply to @quaglietta13 "@wheegie I was prescribed gabapentin for joint pain. What a horrible experience. I was wasted, fatigued..." + (show)
Profile picture for quaglietta13 @quaglietta13

@wheegie
I was prescribed gabapentin for joint pain.
What a horrible experience. I was wasted, fatigued and slept horribly.
I stopped after 3 days. Same story Doctor did not make me aware of any side effects.

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@quaglietta13
It amazes me that the medical community isn't aware of these side effects! I'm weaning myself off. Thanks for the response.

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