1. < Blood Cancers & Disorders

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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marvey | @marvey | Jun 21, 2023
In reply to @harley23 "I pray you are doing well with your treatment. I was diagnosed with MGUS a year..." + (show)
@harley23

I pray you are doing well with your treatment. I was diagnosed with MGUS a year ago, but I suspect I've had it a few years before diagnosis. When you had MGUS, did you ever experience a feeling of wooziness? Not dizziness. It's a feeling like I'm drunk! Worst when I stand (it is not my blood pressure), better when I sit down, and goes away completely when I lie down. It sounds positional of course. I have an appt with my ear nose throat doc at the end of August (took 4 months to get in to him!). Hematologist doesn't think it's from MGUS, but I wonder. I've seen a neurologist/neurosurgeon, endocrinologist, and of course, my PCP. No one can figure out the cause so far, and it has become debilitating.

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Don’t worry about how or when. It’s difficult not to keep something so devastating in the forefront but keep active and healthy and pray. Something will send you to the doctor and X-ray will confirm progression.
I had aches and pains periodically but only saw a doctor every 2 years to keep track of my numbers. Maybe that’s why MGUS took so long because I didn’t live it.
I developed ear problems with MM and thought I was going deaf. The prescription ear drops did not work. I got better by bulking my omega-3s and tracking my water intake.
Maybe a CBC blood test to rule out deficiencies or infection and might be good baseline to have for your appointment in August.
It is hard to get doctors to listen and pay attention because you cannot read this disease in a medical book. All of our baggage will help someone in the future.

REPLY
harley23 | @harley23 | Jun 21, 2023
In reply to @marvey "Had MGUS for 15 years. Five years ago became multiple myeloma." + (show)
@marvey

Had MGUS for 15 years. Five years ago became multiple myeloma.

Jump to this post

I pray you are doing well with your treatment. I was diagnosed with MGUS a year ago, but I suspect I've had it a few years before diagnosis. When you had MGUS, did you ever experience a feeling of wooziness? Not dizziness. It's a feeling like I'm drunk! Worst when I stand (it is not my blood pressure), better when I sit down, and goes away completely when I lie down. It sounds positional of course. I have an appt with my ear nose throat doc at the end of August (took 4 months to get in to him!). Hematologist doesn't think it's from MGUS, but I wonder. I've seen a neurologist/neurosurgeon, endocrinologist, and of course, my PCP. No one can figure out the cause so far, and it has become debilitating.

REPLY
1 reply
marvey | @marvey | Jun 20, 2023
In reply to @marvey "Had MGUS for 15 years. Five years ago became multiple myeloma." + (show)
@marvey

Had MGUS for 15 years. Five years ago became multiple myeloma.

Jump to this post

Had MGUS 15 years

REPLY
marvey | @marvey | Jun 20, 2023

Had MGUS for 15 years. Five years ago became multiple myeloma.

REPLY
3 replies
harley23 | @harley23 | Jun 20, 2023
In reply to @pmm "I fell backward last month and busted my head open. There was a snake in the..." + (show)
@pmm

I fell backward last month and busted my head open. There was a snake in the wreath in my door, previously occupied by fledgling house finch. I was surprised to see five feet of rat snake, six inches from my nose when I opened the door.
I slammed the door and took a step or two backward, losing my balance and falling on my bionic hip. My head flung back and hit the molding around the opening to my dining room.
Head wounds bleed profusely so it looked like a crime scene, the sight of which nearly gave by husband a heart attack.
Fortunately, my head is hard and I was stitched up at the urgent care with no other injuries.
Anyway…
I do not feel confidence in my balance which does impact my level of activity. This has a domino effect as lack of exercise impacts muscle mass and surely increases my wobbliness. Catch 22.
And to add insult to injury, now I will have to say yes when the medical people ask about falls.

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OMG! I would have had a heart attack with that snake scene!! They're all giant anacondas as far as I'm concerned! I'm glad you didn't get a concussion or dislodge your hip. I totally understand how lack of being able to safely exercise is an issue. I recently went on my Nextdoor website and bought a small, used stationary bike. No bells and whistles. It gets me out of my recliner, and I can watch TV as I exercise. I. Hate. Exercise. Always have. So I'm starting out very slowly. I don't want to dread it, because I know then I'll stop using it. Hang in there.

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Mentor
Patty, Volunteer Mentor | @pmm | Jun 19, 2023

All the tingling in my fingers is not a result of the fall, because I had that before. The orthopedic foot surgeon who said that there was nothing he could do to help my feet prescribed gabapentin. It was very shortly after I started taking that that I had tingling in my fingers. I consulted With Dr. Google (do as I say, not as I do 😂😂) and found that there was a study that linked finger tingling with gabapentin. I called my PCP who said I could DC it which I did. The tingling remains however. These are some good ideas though. My blood pressure is fine.

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gina5009 | @gina5009 | Jun 19, 2023
In reply to @harley23 "I have MGUS too and have a question about your dizziness. Is it a feeling of..." + (show)
@harley23

I have MGUS too and have a question about your dizziness. Is it a feeling of the room spinning or a feeling like you're drunk? I've had dizziness, but the feeling I have when I stand or sit is like I'm drunk. It has slowly worsened over the past year, and I have seen many different specialists trying to figure it out. I can't get into my ENT until the end of August. I was diagnosed with MGUS in July 2022, and my bloodwork is stable. I've had vertigo (dizziness), but this is different and goes away when I lie down. I too have lost my stamina, so recently purchased a stationary bike to try to get some exercise. I sometimes stagger, so don't feel safe going outside to walk.

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Have you checked your blood pressure. Sometimes when your blood pressure is low it can cause this type of problem.
Gina5009

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Mentor
Lori, Volunteer Mentor | @loribmt | Jun 19, 2023
In reply to @pmm "I fell backward last month and busted my head open. There was a snake in the..." + (show)
@pmm

I fell backward last month and busted my head open. There was a snake in the wreath in my door, previously occupied by fledgling house finch. I was surprised to see five feet of rat snake, six inches from my nose when I opened the door.
I slammed the door and took a step or two backward, losing my balance and falling on my bionic hip. My head flung back and hit the molding around the opening to my dining room.
Head wounds bleed profusely so it looked like a crime scene, the sight of which nearly gave by husband a heart attack.
Fortunately, my head is hard and I was stitched up at the urgent care with no other injuries.
Anyway…
I do not feel confidence in my balance which does impact my level of activity. This has a domino effect as lack of exercise impacts muscle mass and surely increases my wobbliness. Catch 22.
And to add insult to injury, now I will have to say yes when the medical people ask about falls.

Jump to this post

I about fell off my chair looking at that snake! I don’t mind snakes but holy crow, having one appear out of the wreath on the door like that??? I’m sure the health of my heart would have gone through some testing right there! Yikes.

I’m sorry you hit your head. That’s awful and frightening when you see all that blood. As for the neuropathy, I’m wondering if the impact didn’t jar your neck muscles to be causing the tingling in your fingers. I was having issues with my fingers going numb for the past few months after an exercise I tried impacted an area that’s sensitive where I had spinal cord damage a few years ago. After confirming with an MRI that my spinal issue hadn’t returned, I was cleared to see my massage therapist. Within 2 sessions all of my numbness had gone away. There can be some impingement of nerves when there’s a sudden jarring of the head/neck. Think whiplash. So you might benefit from a professional licensed massage therapist. If they specialize in myofacia release, even better. But it might be worth a shot. If nothing else, you’ll eel better. ☺️

REPLY
Mentor
Patty, Volunteer Mentor | @pmm | Jun 19, 2023
In reply to @gingerw "Oh, dear @pmm, that is nothing to sneeze at! When you tell medical about your fall,..." + (show)
@gingerw

Oh, dear @pmm, that is nothing to sneeze at! When you tell medical about your fall, remember to include it was a reaction to a snake in your face, not just a "simple" balance issue!

I use a cane more and more, not trusting any surface my left foot lands on. Seeing that I cannot feel anything with that foot, I am always watching the ground, but even little changes can make me jumpy. Fortunately the neuropathy is only in my left leg/foot!
Ginger

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Is that unusual to only have neuropathy in 1 foot?
I’m starting to get a little tingling in my hands as well.
🥺

REPLY
1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Jun 19, 2023
In reply to @pmm "I fell backward last month and busted my head open. There was a snake in the..." + (show)
@pmm

I fell backward last month and busted my head open. There was a snake in the wreath in my door, previously occupied by fledgling house finch. I was surprised to see five feet of rat snake, six inches from my nose when I opened the door.
I slammed the door and took a step or two backward, losing my balance and falling on my bionic hip. My head flung back and hit the molding around the opening to my dining room.
Head wounds bleed profusely so it looked like a crime scene, the sight of which nearly gave by husband a heart attack.
Fortunately, my head is hard and I was stitched up at the urgent care with no other injuries.
Anyway…
I do not feel confidence in my balance which does impact my level of activity. This has a domino effect as lack of exercise impacts muscle mass and surely increases my wobbliness. Catch 22.
And to add insult to injury, now I will have to say yes when the medical people ask about falls.

Jump to this post

Oh, dear @pmm, that is nothing to sneeze at! When you tell medical about your fall, remember to include it was a reaction to a snake in your face, not just a "simple" balance issue!

I use a cane more and more, not trusting any surface my left foot lands on. Seeing that I cannot feel anything with that foot, I am always watching the ground, but even little changes can make me jumpy. Fortunately the neuropathy is only in my left leg/foot!
Ginger

REPLY
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