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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
Replies to "I was also diagnosed with MGUS approximately one year ago. This was found by routine lab..."
@magic3ems Welcome to Mayo Clinic Connect! Fear or apathy can drive us to do things that, when we look back in hindsight, make us wonder why we did something, that's for sure! Now it sounds like you have been motivated to go forward and figuring out what is going on, and good for you on that!
As @kayabbott mentioned, most of the time MGUS is asymptomatic, and it will give you peace of mind to figure out the cause for those annoying symptoms. Allergies, blooming plants, medication interactions, the list goes on and on.
I hope your first cousin is addressing their new diagnosis. I will be interested to hear what their treatment plan includes, and also what you find out next week.
Ginger
@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?
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Regarding your symptoms, it is good to see a doctor ASAP because those could be associated with cardiovascular or other problems and it is best to find out what and how to treat them. Beforehand, write down your symptoms, and if they are constant or vary under different times/conditions. MGUS is considered asymptomatic, although it could hit individuals differently. I've had MGUS for 8 years and it is ramping up, but not at SMM yet and still asymptomatic.