Diagnosed: MGUS

Thank you for your answer, I do feel quite anxious. I have always been a healthy person and basically had very little interaction with the medical profession, pretty much nothing more than check ups and vaccinations, never even had surgery. I am waiting to hear back from my doctor about the referral to a hematologist but it seems like more often than not one sees a nurse a few times before a doctor. I will keep on this

Thank you for your answer, I do feel quite anxious. I have always been a healthy person and basically had very little interaction with the medical profession, pretty much nothing more than check ups and vaccinations, never even had surgery. I am waiting to hear back from my doctor about the referral to a hematologist but it seems like more often than not one sees a nurse a few times before a doctor. I will keep on this

@sandramgus
Hello! Welcome to Mayo connect. We have quite a few members diagnosed with MGUS, myself being one of them. it seems that I tell my diagnosis story a lot so for those of you who have heard it just tune out of my post but please share yours for the new members.
Like almost everybody else, my diagnosis was because I was seeking medical guidance for something totally unrelated. I had been in an auto accident and was rear-ended so I had neck pain. my PCP ordered a CT scan and they found a dark spot on my spine at C2 among other things. That piqued the curiosity of my PCP so she ordered more tests. The bloodwork came back with a paraprotein in my blood, which got me a ticket to a hematologist/oncologist. It was a long wait before I finally got an appointment. The Hem/Onc doc ordered his own specialized testing, and verified that I had MGUS.
By then I had totally freaked myself out by reading everything I could, in my Google searches about multiple myeloma and MGUS. Dr. Google is quite fond of the worst case scenario. My anxiety was sky high and it even raised my white count. I felt sick and I just couldn’t shake a sense of doom. And to top it off, I could not get into the hematologist/oncologist of my choice.
I did finally get into see the new guy and lo and behold, he was really a good match for me. He is not overly reactive and is able to read me well enough to know when I need some reassurance. He’s on top of the literature, and has a great deal of experience, dealing with multiple myeloma and MGUS.
The good news is MGUS is not cancer.
https://www.mayoclinic.org/diseases-conditions/mgus/diagnosis-treatment/drc-20352367
Among other blessings, I get the best preventative care of anybody I know. I started out with quarterly blood draws and scans and now I see my hematologist/oncologist every six months with scans and blood draws. My “numbers” have not really moved. They have crept up a little but nothing I am concerned about. Also, I try to take good care of myself and, try to eat, sleep and live healthy. Last, but not least, I found the Mayo Connect community which gives me support, camaraderie, and cutting edge information/research from the Mayo clinic.
Can you tell me a little more about your current situation? Have you found a good hematologist/oncologist? If so, how often will you go in and what is the plan for your care?

@rustypenny
Welcome to the Mayo Clinic connect. It’s quite an emotional roller coaster ride when you are first diagnosed with MGUS. We all consult with Dr. Google and the results usually enough to make us anxious. Dr Google is a glass-half-empty gal.
Sometimes it takes a little while to find just the right physician. You want to look for a hematologist/oncologist who is an expert in treating multiple myeloma. MGUS is not cancer. For most of us, the risk of MGUS progressing into multiple myeloma is very low.
It’s important to try and relax as much as you can and not let your anxiety make you feel physically ill. It will. It will possibly even raise your white count. Your hematologist/oncologist will decide what kind of diagnostic testing you should have. You don’t need to react immediately until you get all the information and have a chance to sit down with him or her. Chances are, you will be in watch and wait limbo with the rest of us as usually MGUS does not require treatment. There is a lot of variation in the approach that different positions take even in terms of diagnosis. Not every MGUS patient requires a bone marrow biopsy. I was diagnosed over three years ago and have opted not to get one unless my lab work indicates that there is progression. Hopefully that will never happen. My numbers have actually gone down to baseline at the time of diagnosis after rising gradually for the first couple of years. I don’t expect my MGUS to go away, but I’m hopeful yet it will not become problematic.
You mentioned that you have not seen a hematologist. Is a referral to a hematologist/oncologist in the works for you? Have you spoken to your physician?

I was also diagnosed with MGUS approximately one year ago. This was found by routine lab work by my rheumatologist. I was scheduled with an oncologist through CARTI very promptly. My bone marrow biopsy came back clear, however, he said he did not get the best sample, but was satisfied. So far, I have only had 2 blood draws. The first there was no change, the second one had a slight change, but the numbers were still OK. However, I have been noncompliant and not followed up with my appointment. I don’t know if I’m doing this out of fear or sheer neglect. But recently, my first cousin was diagnosed with multiple myeloma. Period I am scheduling an appointment for the next week. In the last two months, I’ve had aggressive headaches, blurred vision, fatigue, memory, loss, and severe headaches. Has anyone experienced the symptoms along with this diagnosis? Now there is a component of fear setting in

I was also diagnosed with MGUS approximately one year ago. This was found by routine lab work by my rheumatologist. I was scheduled with an oncologist through CARTI very promptly. My bone marrow biopsy came back clear, however, he said he did not get the best sample, but was satisfied. So far, I have only had 2 blood draws. The first there was no change, the second one had a slight change, but the numbers were still OK. However, I have been noncompliant and not followed up with my appointment. I don’t know if I’m doing this out of fear or sheer neglect. But recently, my first cousin was diagnosed with multiple myeloma. Period I am scheduling an appointment for the next week. In the last two months, I’ve had aggressive headaches, blurred vision, fatigue, memory, loss, and severe headaches. Has anyone experienced the symptoms along with this diagnosis? Now there is a component of fear setting in

I was also diagnosed with MGUS approximately one year ago. This was found by routine lab work by my rheumatologist. I was scheduled with an oncologist through CARTI very promptly. My bone marrow biopsy came back clear, however, he said he did not get the best sample, but was satisfied. So far, I have only had 2 blood draws. The first there was no change, the second one had a slight change, but the numbers were still OK. However, I have been noncompliant and not followed up with my appointment. I don’t know if I’m doing this out of fear or sheer neglect. But recently, my first cousin was diagnosed with multiple myeloma. Period I am scheduling an appointment for the next week. In the last two months, I’ve had aggressive headaches, blurred vision, fatigue, memory, loss, and severe headaches. Has anyone experienced the symptoms along with this diagnosis? Now there is a component of fear setting in

Patty, how wonderful that your numbers have gone down to baseline after gradually rising for the first couple of years! Do you or your doctor attribute that to anything?

@1oldsoul
Thank you! I’m pleased. My hematologist/oncologist is very skeptical but I did start taking turmeric/curcumin. I take 1000 MG’s twice a day. I started out with 1000 once a day and added the evening dose after having good results the first six months of 2024. My numbers had been inching up and I heard so many accounts of people having good results with turmeric that I decided to try a higher dose. I did check with my PCP and went through all my medication’s with the staff Pharm D at my med center clinic. Finding no interaction issues, I increased the dose.
My latest appointment again showed a drop in my “numbers.”
Other than that, I haven’t made any lifestyle changes nor have there been medication changes of any kind. I’m guessing it’s related to the turmeric/curcumin. I couldn’t wait to tell my oncologist, but he simply shrugged and said he had no objection to me taking it. He’s going to have to see big number data before he gets excited. Bah humbug!
Thanks for asking. My empiricist leanings don’t allow me to get too giddy because it’s impossible to establish cause/effect but my numbers went down with both of my hem/onc appointments in 2024. I am also monitoring kidney and liver function. So far so good.

@magic3ems
I totally understand your reluctance to go back to see the oncologist. It is a scary thing. I’ve been going for three years now regularly and I have to say, I now find my oncology visits reinforce a feeling that everything is under control. With every visit he says“your numbers are stable. There is nothing to worry about, but if they do spike and we find that you have drifted into smoldering multiple myeloma or multiple myeloma, you have to keep in mind that it is very treatable now. We’ve got you.”
It’s also reassuring to me to chat with the patient on connect. Some of the patients who post here have been diagnosed with MGUS for decades. They are living full, rich lives, and they’re not letting this blood disorder define them. MGUS is not cancer, and there is very low risk for progression to multiple myeloma. When you think about it, you are fortunate to be among us who know that we have this blood disorder so we can be monitored to make sure we’re not getting sick.
I’m sorry to hear that you are having these symptoms. So many of us have coexisting conditions and one can’t really attribute any of those symptoms to MGUS without further analysis so you need to get back to the doctor. Whatever it is, it’s not going to get better as your anxiety grows. Anxiety isn’t your friend and will really make you feel sick. That may be all it is.
But whatever it is, it is not going to get better without further investigation.
Were you able to get an appointment? Have you been referred to a hematologist/oncologist? That is definitely a good first step.
Will you let me know that you have scheduled an appointment and when you will go see the doctor?