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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Ginger, Volunteer Mentor | @gingerw | Oct 8, 2023

In reply to @bunt01 "This is something I've been diagnosed over three years ago. I have my blood level checked..." + (show)

@buntO1 I wonder if having a more complete workup would help, and see if there isn't more going on beside MGUS? Has your medical team ever brought up the idea of more testing? Do you have any other health issues that might be contributing to your situation?
Ginger

remainanonymous | @remainanonymous | Oct 8, 2023

Hi all. Three questions as a newly-found MGUS IGA lambda 52-year-old, thus far assessed as intermediate-low risk per Mayo criteria (still need to finish imaging). I'm in New Mexico, where a lot of folk I know go out-of-state for specialty care or end up moving. (There are about 8 neurologists in New Mexico on my minimal state insurance, and over a year wait for each).

1) Is there a significant radiation risk of a PET-CT versus MRI? I had a "few small vague lucencies which may represent venous lakes although lesions cannot be excluded" on my skull, but no other findings in the full-body skeletal survey. My hem-onc recommended PET/CT, but only after it sounded like they wanted me to decide.

2) Since we don't have neurologists, would a PET/CT and/or an MRI help my hem/onc detect any non-MGUS illnesses that may be causing my constant severe electric shock sensations, like MS? If so, I'd lean towards one over the other. (My nerve conduction and EMG are normal).

3) I'm going to splurge on an out-of-pocket, out of state specialist consultation for my neuropathy/neuralgia. Would a MM specialist know how to recommend assessment for the neuropathy/neuralgia, or should I rather consult with a neurologist who specializes in neuropathy and knows a bit about MGUS?

Thank you for your help and guidance. I won't interpret anything as medical advice; I'm just shooting into the dark here.

bunt01 | @bunt01 | Oct 8, 2023

This is something I've been diagnosed over three years ago. I have my blood level checked every two week at the Oncologist hematologist. I've had two BMB. I have to get a blood transfusion every four to six weeks. The doctors do not know why my body is not making red blood cells. It's very frustrating.

harley22 | @harley22 | Oct 8, 2023

In reply to @laurinea "Wow you are really being hit with things. I hope things stabilise for you." + (show)

Thanks, I hope so also.

harley22 | @harley22 | Oct 8, 2023

In reply to @laurinea "Why don't you think MGUS aren't causing your nerve related problems?" + (show)

Good question, but they made it seem like it’s nothing to worry about, and I’ve been having these nerve symptoms for 11 yrs now,progressing from my feet and going up my body.
I have an appt next week for labs,I will ask when I see doc, if it’s related to my MGUS.

cbneuropathy | @cbneuropathy | Oct 8, 2023

In reply to @anne13 "Good morning. I was diagnosed with MGUS IgM Kappa with a small fiber neuropathy in 2012...." + (show)

Curious to hear more from you and others and possible symptoms. I‘ve been diagnosed a year ago with MGUS IGM Kappa Light Chain and in 2019 with neuropathy. This year during an inpatient neurology check up I was diagnosed with small fibre neuropathy. My oncologist/haematologist doesn‘t think there is a connection as my neuropathy is developing very slowly. I just had my 6 months blood check last week and awaiting feedback from my specialist. Any suggestions or situations I need to be especially careful with.

marylou329 | @marylou329 | Oct 8, 2023

I was diagnosed 10 years ago with a M spike and IGg Lambda and now I am having low rbc, wbc and platlets. I just had a BMB this past Thursday and waiting and worrying about the results. I also am having leg cramps which may be from the anemia. It's a very confusing disease.

anne13 | @anne13 | Oct 8, 2023

Good morning. I was diagnosed with MGUS IgM Kappa with a small fiber neuropathy in 2012. Numbers had been stable but last three labs have shown increase in Kappa and FLC ratios.

laurinea | @laurinea | Oct 8, 2023

In reply to @harley22 "My MGUS levels are not a concern at this time, so they’re being watched by myhemotologist-oncologist...." + (show)

Why don't you think MGUS aren't causing your nerve related problems?

laurinea | @laurinea | Oct 8, 2023

In reply to @harley22 "I also have MGUS which was discovered in lab work few years ago by accident. I..." + (show)

@harley22

I also have MGUS which was discovered in lab work few years ago by accident.
I get checked every 6 mos by my hematologist-oncologist by doing bloodwork and my levels are ok according to her, so I need to do nothing right now.
She also sent me for a skeletal survey, where they did X-rays starting at my back and going down to my feet.
That checks for tumors in my bones I’m told.
So far so good, no tumors seen.
But here’s the crazy part for me, I have had numbness,tingling, and pins and needles in my feet and legs for about 10-11 yrs now.
I can’t feel my feet at all, which makes it hard to walk, and maintain my balance.
I have fallen in the past, so I use a cane and or a walker because I’m afraid of falling and breaking a hip.
The numbness has travelled up to only my right hand now, which makes it hard to hold things with it.
I’m learning to use my left hand as much as I can.
I can’t hold a pen, so I can’t write or sign my name on forms,etc.( And I had beautiful penmanship in the past).
My lips and some of my face have been numb since the beginning,when all this started.
I have no feeling in my lady parts, and sometimes can’t feel when I have a bowel movement while on the toilet.
I had a biopsy done on my lower abdomen and didn’t feel it.
I broke my right ankle 3 times in a year, and did not feel the bone coming thru my ankle, and nor did I feel ant postoperative pain after the surgeries to put in plates and screws.
I guess that’s one advantage of this condition that I have.
I’ve been to 6 or more neurologists and I’ve been told they can’t help me, and that I’m unique.
I’ve been tested for MS, Amyloidosis, myeloma.
I’ve been on a ton of the usual meds like Gabapentin, with no improvement in my symptoms.
I’ve even had IVIG infusions, several rounds, and no improvement noted, so they were stopped.
I was diagnosed generally few years ago with CIDP, which is an autoimmune disease where the myelin sheath protecting my nerves, is being destroyed by my body, cause unknown.
This has made my life a living hell, can’t do much because of my weaknesses.
No dancing,exercising, running, etc.
My only footwear now is a good pair of sneakers, no more sandals or heels for me.
Currently I am working on getting a new iv drug called Rituximab which has good results for people with CIDP.
So that’s most of it for now, I’ve become handicapped to a large degree.
I hope this numbness doesn’t go to my left hand, because then I’ll be in real dodos!
Keep in touch, hope things get better for you.

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Wow you are really being hit with things. I hope things stabilise for you.

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