MGUS Symptoms: What symptoms did you experience?

@jdm02

I beg to differ. WI has color in the fall, ❄️ winter mornings, cool springs and warm summer days. LOVE the 4 seasons!

I'm on a mission for, at a minimum, the respect of a doctor around here, though, who will be able to put all this weird stuff, that comes and goes, together and at least say most of it is due to MGUS. I've had a lot of this wayyyyyy before 67.

@suppiskey2surv shoveling snow. No thank you. 🙂
4 seasons, yeah you get that one. Can’t beat the beach!!
Let’s all keep researching and helping one another. Nice grp. we have.
Stay well everyone.

@jdm02 I am exercise avoidant, but I did physical therapy for eight weeks to strengthen my core and it was really a productive experience. I don’t know whether it served to minimize the pain or if I didn’t notice it as much because I was more active, but I need to get busy and exercise more.
Ugh.

This is for both you @jeannie215 and @kayabbott . My story is long too and has been written before, but totally agree with what Patty @pmm said above. Absolutely, get an expert, have all the tests for baseline and clear diagnostics = Bone Marrow Biopsy, 24 hour urine, PET scan... I recommend a bone density scan too for monitoring for osteopenia / porosis. I'm 66, was diagnosed on 15 February 2023, have been involved with a whole food plant-based diet study out of Memorial Sloan Kettering in NYC. My last visit, one year mark of study participation will be next month on 13 March.

I too have IgA Kappa Light Chain MGUS. No M-spike. My labs have been stable over the course of this past year. I have a local, highly competent, and responsive hematologist/oncologist, I also meet with a top gun at Dana Farber in Boston, and have my study and expert Provider at MSK.

Of significance is that I came to be a lay-expert due to my dear husband's under diagnosis of MGUS when it was probably already smoldering myeloma. His supposed local expert, before I knew what I know now, did not perform the definitive diagnostics such as BMB, 24 hr urine, nor PET. He only did labs and when the IgA continued to climb he assured us all was well. He was wrong, very, very wrong. Steve died on 24 July 2022 of MM. The lame oncologist incorrectly diagnosed him with MGUS in October 2017.

That's the short story. Seek out a known expert in the field of MGUS/SM/MM; get the appropriate baseline diagnostics; advocate for yourself; learn all you can; breathe; eat well; exercise regularly; keep your weight down; have faith; vacation often. Oh, my guy at Dana Farber told me to "Keep your stress down."

You're in the right place to continue you journey. You are not alone. 🙏💜

@allstaedt57 - My husband, also, with SM for a couple of years and then full blown MM.. went into chemo...neuropathy hit him so bad he was never able to walk afterwards....now 4 years after he passed way with MM and Pulmonary Hypertension (and yes, in the middle of the Covid mess) I was diagnosed with MGUS. Really caught me off guard. Did this diagnosis for you make you question how a disease like this is unlikely to be in the same family..not blood related? Does this make you question your children, if there are any, having this same diagnosis at some time in their lives?

@jdm02 I am exercise avoidant, but I did physical therapy for eight weeks to strengthen my core and it was really a productive experience. I don’t know whether it served to minimize the pain or if I didn’t notice it as much because I was more active, but I need to get busy and exercise more.
Ugh.

@pmm
Good morning to my forum friends. A month ago we moved to Texas to be closer to my husband’s family so this necessitated seeing a new hematologist for my IGM MGUS. I was diagnosed in 2021 and had been seen by one in Arkansas since then. I feel SO blessed to have found this new one who is so kind, unhurried, knowledgeable and up to date on research. We discussed the Memorial Sloan Kettering clinical trials headed by Dr Irvi Shah on a Whole Foods plant based diet which encourages eating 30+ whole plant based foods per week which would include vegetables, fruit, nuts, seeds and legumes in their whole unprocessed form (cooked foods are fine) which would mean avoiding granola bars, frozen vegetarian dinners, chips, etc. She asked me what I was doing to look so fit and healthy at 71 (I told you she is a gem!) and I told her that I walk 3-6 miles outside every day and that my goal is 100 miles a month but I don’t always reach it due to weather or appointments etc. (I reached it this month!) I have enjoyed walking my whole life and find it helps my osteoarthritis and more importantly my mood. It gives me a sense of accomplishment and also because I have lived in rural areas the past 30+ years, I get to enjoy the nature and animals I love so much including seeing cattle in pastures, squirrels, rabbits etc. At my last home, the wild rabbits got so used to seeing me walk every day they never moved from the side of the road when I passed by. My new hematologist told me that research has shown that staying active has shown to have the most positive influence in preventing progression of MGUS. So my point here is this- do whatever you can do to move your body. If it is walking, swimming, treadmill, dancing, yoga or whatever, find something you enjoy because you will be more willing to stick with it. Keep a journal when you start and keep noting your progress even if it only progresses in minutes. I promise you it will do wonders for you! My prayers are with each and every one of you and sending you all a hug. A picture from my morning walk last week at sun-up.