MGUS Symptoms: What symptoms did you experience?

I have not been rechecked for progression of MGUS they check it once a year. I have not spoken with my hematologist about this yet, but I have talked with my oncologist, and they recommended going to my primary care doctor. Unfortunately, my primary care doctor said that she doesn't have the ability to handle such a complicated case. she advised I go back to Mayo to get care. Mayo tells me to go to the ER.
The Carcinoid was removed and there is no further treatment other than monitor annually. No Chemo/radiation was needed.
I am sending a message to my hematologist today asking for a check for progression.

This has to be so frustrating for you! Even your primary physician should be able to have bloodwork run to at least check for EBV, the virus that causes mono. They can also run a CBC with differential which breaks down individual blood components. Those results can show indications of infections, inflammation, etc..

It’s really a great idea to send the message to your hematologist to see about getting in sooner than for your annual evaluation. You’re feeling miserable and you’d like to know why you’re continuing to experience all of these symptoms. Make sure that you list all of your symptoms too and when they started. How long ago was your last checkup?

@angiew
Welcome to the Mayo Clinic Connect. You’ve had a lot to deal with health-wise. It’s frustrating when you don’t feel well and are not getting answers that help us understand what is wrong. You know your body the best and it’s important that you get good information from your medical treatment providers.
So how do you go about that?
We are all so different, we who are in the MGUS club. Some of us have co-existing conditions. Some of these conditions have symptoms that make it difficult to sort out what is attributable to what condition. I have type 2 diabetes for example. I also have peripheral neuropathy. My PCP says that is likely due to my MGUS. My hematologist/oncologist says it is likely due to the MGUS.
Regardless, it’s somewhat debilitating when I want to go hiking or dancing. I don’t get caught up in the dueling doctors, I want to know what treatment options I have.
With MGUS, we all need an oncologist/hematologist who is an expert in Multiple myeloma. The rate of progression for MGUS to smoldering or multiple myeloma is small, but it’s possible. So we need a physician who treats multiple myeloma all the time.
Of equal importance, is having a physician who listens to us. If you feel that crummy, there must be a problem. Be the squeaky wheel and insist on a thorough diagnostic workup. Call for an appointment. If you do not feel heard, get a second opinion. A large teaching hospital or a reputable cancer treatment center is a good bet.
I would love to hear how this plays out for you. I’m also very sorry that you feel so sick. Can you let me know how you are doing and what actions you take to feel better?

Well, I can ID. I am 69 yrs old male, confirmed dx 3 wks ago and have been having all kinds of weird stuff for the past 2.5 yrs after having a Prostatectomy done. Symptoms are fatigue, night sweats, below normal temp, neuropathy in hands & feet that is intermittent. My Onc/Hematologist just started looking for MGUS Dec 23, as he was watching my blood counts jump all over the map. Did a panel beginning of Dec, 23 and by March 24 had a bone marrow biopsy that confirmed the MGUS dx. The symptoms have not been attributed to anything else, so I would say it is all related to the MGUS starting sometime prior to my prostate cancer diagnosis. Just recently informed that my Onc/Hematologist is leaving the area, so now I have to find someone that can do the proper monitoring and knows about MGUS.

I have tender spots over bones, particularly over ribs. They can be painful when palpated. They come-and-go but sometimes last months. MRI did not pick up any osseous lesions (I am due for another MRI in June). So far I am in the MGUS club with mildly elevated Mspike proteins and a thoracic compression fracture.
Anyone else experience painful spots over ribs or other bones? Did they evade an MRI?

I just recently had my mgus testing. My kappa light chains are up to 34.8 a significant increase. Haven’t had my appointment yet. Thoughts?? How dangerous is this ? Lambda ok, but ratio High. Thank you ahead of time.

My experience:
I had 2 thoracic compression fractures over 2 years ago from hitting a bump snow skiing. My osteoporosis finding led to an MGUS diagnosis.
One fracture was mild & the other was moderate and both healed on their own. I sometimes have a little soreness in my ribs since then. It’s gotten better. MGUS is stable and low numbers so probably any soreness for me is unrelated to MGUS.

@sportedgee
You’ve certainly had a lot to deal with medically over a short period of time. It’s always hard to tell if symptoms are related to MGUS or to coexisting health problems. With A prostatectomy, there are hormonal changes and 75% of the men who have had the surgery get what I relate to as hot flashes. Go figure. https://www.cancer.net/coping-with-cancer/physical-emotional-and-social-effects-cancer/managing-physical-side-effects/hormone-deprivation-symptoms-men#:~:text=Up%20to%2075%25%20of%20men,as%20gabapentin%20(Gralise%2C%20Neurontin)
But we also know that night sweats can be associated with hematological cancers. So how does one know?
I’m sorry that your hematologist/oncologist is leaving. I always encourage people to find a hem/onc expert who is very experienced with multiple myeloma. There may be a local teaching hospital or cancer treatment facility close to you. That would be a good resource. I looked for someone who takes, his or her time with me and answers all my questions. I want to be on the same page in terms of being as proactive as possible with my MGUS. We don’t have cancer with MGUS, and the statistics are in our favor that we will die of something unrelated, but we do have the potential.
Where will you start your search for another treating physician?

@omemee
That darned patient portal. I am always snagging a glance at it way before my appointment then I’m anxious about what I’ve read until I get to sit down with my provider to go over it. A life hack I have learned is to get my blood work done the day before I see my physician and then I don’t look at it until I’m in the office with him and we go over it. That has served me well because my anxiety gets the best of me otherwise.
Your doc will watch for rises in your kappa light chain and your kappa lambda ratio to guard against progression to smoldering or multiple myeloma. I think it’s important to discuss this with her/him. Keep in mind that the treatment advances over the past few years make the diagnosis far more treatable than even five years ago.
When is your appointment? If it is too far in the future, you can always ask for a phone consult or to have your appointment moved up.
Will you let me know what happens?

My appointment is Wednesday. I have some questions written down. Please let me know if you have any more specific suggestions as to items to discuss. My kappa iga went up from 23.2 to 34.8 in six months. Urine is always foamy now. I push through and walk a couple miles per day. Thanks for writing to me. Your support is very kind.