MGUS Symptoms: What symptoms did you experience?

For years most of the doctors I've been to seem interested in only addressing the symptoms I've experienced, as unrelated. I honestly don't think they have been. They have come and gone, some only lasting for moments, yet others for days. I am almost 68 but have struggled with some of these when I was much younger so I doubt they can now be attributed to the aging process. I was first diagnosed with MGUS about 16 years ago. My mother died of MM when she was only 67. I've had 2 bone marrow biopsies, 6 Reclast infusions, seen hematologists and experts in MM. No cancer ever found, yet I am challenged with a wide range of some very strange, sometimes very painful symptoms. I can function pretty well, and have my low M-spikes checked every year for changes but get the proverbial "stink eye" from doctors, friends and family whenever I experience these strange jolts of pain that literally take my breath away or cause me to sway or stumble or stop me dead in my tracks. These things and a host of others have been going on for years. I, honestly, think most of this stuff is related to the MGUS, but trying to find anyone in the medical profession who will listen and tie any of this, directly, to MGUS is, I fear, hopeless. I am beyond reassured I don't have any sort of cancer; yet these things happen now and again. It would just be nice to have a cause determined and have an explanation for them. It's been noted that I have an undetermined connective tissue disorder but no one seems interested in finding out which one or tying the MGUS to it. Sooooooo frustrating!

For years most of the doctors I've been to seem interested in only addressing the symptoms I've experienced, as unrelated. I honestly don't think they have been. They have come and gone, some only lasting for moments, yet others for days. I am almost 68 but have struggled with some of these when I was much younger so I doubt they can now be attributed to the aging process. I was first diagnosed with MGUS about 16 years ago. My mother died of MM when she was only 67. I've had 2 bone marrow biopsies, 6 Reclast infusions, seen hematologists and experts in MM. No cancer ever found, yet I am challenged with a wide range of some very strange, sometimes very painful symptoms. I can function pretty well, and have my low M-spikes checked every year for changes but get the proverbial "stink eye" from doctors, friends and family whenever I experience these strange jolts of pain that literally take my breath away or cause me to sway or stumble or stop me dead in my tracks. These things and a host of others have been going on for years. I, honestly, think most of this stuff is related to the MGUS, but trying to find anyone in the medical profession who will listen and tie any of this, directly, to MGUS is, I fear, hopeless. I am beyond reassured I don't have any sort of cancer; yet these things happen now and again. It would just be nice to have a cause determined and have an explanation for them. It's been noted that I have an undetermined connective tissue disorder but no one seems interested in finding out which one or tying the MGUS to it. Sooooooo frustrating!

For years most of the doctors I've been to seem interested in only addressing the symptoms I've experienced, as unrelated. I honestly don't think they have been. They have come and gone, some only lasting for moments, yet others for days. I am almost 68 but have struggled with some of these when I was much younger so I doubt they can now be attributed to the aging process. I was first diagnosed with MGUS about 16 years ago. My mother died of MM when she was only 67. I've had 2 bone marrow biopsies, 6 Reclast infusions, seen hematologists and experts in MM. No cancer ever found, yet I am challenged with a wide range of some very strange, sometimes very painful symptoms. I can function pretty well, and have my low M-spikes checked every year for changes but get the proverbial "stink eye" from doctors, friends and family whenever I experience these strange jolts of pain that literally take my breath away or cause me to sway or stumble or stop me dead in my tracks. These things and a host of others have been going on for years. I, honestly, think most of this stuff is related to the MGUS, but trying to find anyone in the medical profession who will listen and tie any of this, directly, to MGUS is, I fear, hopeless. I am beyond reassured I don't have any sort of cancer; yet these things happen now and again. It would just be nice to have a cause determined and have an explanation for them. It's been noted that I have an undetermined connective tissue disorder but no one seems interested in finding out which one or tying the MGUS to it. Sooooooo frustrating!

@suppiskey2surv
I get those pains as well. Random and short-lived, fortunately. They will definitely take my breath away. My hem/onc doc is diligent with regular scans but has never connected those dots. It would be nice to get a reasoned explanation.
I get these pains in my feet. Do you get them other places?

A hematologist/oncologist is the person to see.The community doctors have a fairly decent population of MGUS cases and they are mostly well so they do not pay attention to subtle changes. I suggest at least an annual consultation with a Hem/Onc. They know the disease and tend to it properly. If you have a teaching or academic medical center near you I strongly suggest you call the Center and make an appointment with a hematologist/oncologist. Entirely different attitude and approach to MGUS. They take it more seriously but do not go overboard with treatment etc. THey understand the symptoms and how they relate to MGUS. THey will get a baseline on you and recommend timely treatment or watchful waiting, for you. IF early in process or low risk they will evaluate annually. If things change then it gets more frequent.

@pmm

Mostly in my ankles but I also get what I can only describe as short bursts if lightning bolt, pricking, shooting pain, in my upper arms and neck. Feels like someone is taking a fork and jabbing and scraping my upper arms sometimes. I must sound like a hypochondriac or something. My knees and feet sometimes, too, will just give out for a few seconds for no reason. None of this lasts very long but it's so very unpredictable. I have other kinds of pain but this kind is probably the worst.