Does anyone else have MGUS?

@laurinea Welcome to Mayo Clinic Connect. We have moved your question over to a discussion already here, so others may see your post!

Getting a diagnosis of MGUS often comes at a time when other things are being investigated. Those tests will show a rise in M protein in the blood, and prompt further investigation.

I daresay hearing a diagnosis of MGUS, when you don't expect anything, can cause anxiety and stress. And those can manifest in some of the symptoms you are speaking of. I know it has been that way with me!

@cheft @pmm and others will want to chime in and tell you their stories, also.

Make a cuppa tea, and pull yourself up to the table. We're here for you!
Ginger

Thank you for reaching out. I had the symptoms mentioned before my diagnosis which is why they did the investigations. I just get a bit confused when pretty much everything I read about MGUS says no symptoms but obviously myself and others do have symptoms.

Hello @laurinea ,

Sorry you are having to go through this. It can certainly take its toll on you with worry and anticipation. I to have MGUS and experience leg pain. This disease affects everybody differently, and no two of us are exactly the same. I encourage you to write down all of your questions and all of your concerns and take those to review upon your first official visit. Try to get all of the clarity that you possibly can during that visit and write down the responses as many times we forget what they have told us later.

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

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.

great points. I will follow it up thanks

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.

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.

Yes I was diagnosed 7 mths ago.

Yes I have mugus