Does anyone else have MGUS?

Yes I have mugus

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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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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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My MGUS levels are not a concern at this time, so they’re being watched by myhemotologist-oncologist.
My CIDP is the issue for the most part, as are my various symptoms that are nerve related.
My EMG tests are all pointing to the diagnosis they gave me.
I really don’t think MGUS is causing all of my nerve related problems.

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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.

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

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

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