Does anyone else have MGUS?

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.

@harley22 I see you have been visiting the neuropathy support group, also. Sometimes our medical team can help us with the worst of the ongoing symptoms of neuropathy, and sometimes not. I have left leg neuropathy, pretty much numb/no feeling from knee down, and like you, I use a cane to help my mobility. It is quite the learning experience to live with this condition. Do the doctors attribute your CIDP diagnosis to manifesting the neuropathy?

MGUS is an interesting condition, as it can affect different people in different ways. Being in communication and trusting your medical team, following their advice, and giving your own input as needed [being your own advocate] can really go a long ways to making your days go as smoothly as possible.
Ginger

Welcome to Connect @bun01 Were you recently diagnosed with MGUS or is this a condition you’ve had for some time?
It would be great if you’d like to share a little more of your story with other members in our forum. Are you on any treatments or are you in active surveillance?

Yes I have mugus

Yes I was diagnosed 7 mths ago.

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.

Thank you @cheft. Like everyone else I will have lots of questions to ask. I have already started a list of things to as lol, I like to be prepared.

great points. I will follow it up thanks

Make sure they run a fat aspiration test. It will help them determine if proteins are attaching to your heart, lungs etc. ask them to review your light chains with you and maybe do a 24hr urinalysis.

my big problem is shortness of breath when i do physical activity. iron infusion and tablet have not help much either. hope you fare well with your issues