Looking for advice: Could this be MGUS, because of low m-spike?

@oliviahutson, just thought I would check in. Have you had further investigations? Any update?

Wow, thank you for your concern! Means a lot to me.
I am going to hematologist/oncologist Monday morning.
New symptoms are my tongue is swollen with ridges on sides. That’s been now for a week.
Just don’t know if it’s MM related now. Any thoughts?

I wanted to jump in and send gentle hugs your way. Wow you are going through A LOT!! I was diagnosed with PV in April and have had some moments but nothing like your list of troubles and pain. Sending healing vibes your way and hope you get help finding answers 🙏
This is an amazing forum for help & support, it takes a village. Stay strong 💪 ✨️ 💓

Thank you Wendy for your response! I am very grateful for all the support here.
I am trying to stay positive and have faith that whatever is going on, I will soon have some answers and move into a solution.

Thank you!
🙏💜

@oliviahutson hi Olivia. I just wanted to reach out as I’ve recently been diagnosed with MGUS as a healthy, fit 41 year old. How is your journey going? Do you have more answers?

@theadosi hello there. It’s been pretty tough for me to be honest. I was also a very fit CrossFitter and spent 5-6 days a week working out and eating super clean for the last 25 years. Oncologist thought I may have Amyloidosis and was sent to Mayo in AZ. Went through multiple biopsies; bone marrow, stomach, PET-CT scans, bone survey, nerve testing, etc. my immune system is very poor and get sick with sinus infections, UTI’s, etc. extremely tired and weak. Lost a lot of weight and have strange skin issues as well. Oncologist doesn’t know what to do because usually MGUS is more asymptomatic. I go in for my 24 urine collection and all my labs every 6 months. I was sick or feeling sick so started working with a naturopath oncologist and started taking fenbendazole and several other supplements. Recently I had stem cell treatment. Still waiting to see if my labs reflect any changes and so far not any change in energy from the treatment. I have blood in my urine now (which I didn’t before) and protein and various other issues with my urine, so they are sending me to urologist and nephrologist now. It’s very frustrating and I just want to get back to me. Grown to understand docs don’t want to help treat symptoms but just “wait and watch” until it’s time for chemo. I refuse to just live like this hence why I sought a naturopath and stem cells. Pls tell me about yourself and I’d love to chat with you about your journey and answer any questions you may have. God is always good! Olivia

@corsair9 not diabetic. My urine recently changed and now I have blood in my urine and high RBC as well as protein. docs just “ wait and watch”

@oliviahutson hi Olivia, thanks for your reply! I’m sorry for your struggling. I can resonate with the wanting to get back to your normal self sentiment. I have some other health issues besides MGUS including labral hip tears and bulging disks in my back. Some of my labs point towards possible connective tissue issues or rheumatoid arthritis. I’ve had to cut back on my activity and really miss playing volleyball and just being as active in general. I also have low iron so can connect with you on the low energy feeling as well. I’ve always been a very independent and competent individual, am single and live alone. Some days I don’t have the energy to get the things I want to get done, so I am trying to learn to let go a little. Do you suffer from anxiety at all? I’ve always been a bit of a worrier and this new MGUS diagnosis definitely has me up at night. I’m struggling with wanting to be educated about MGUS, yet the more I read, the more anxious I seem to get. I also don’t want to burry my head in the sand. I am seeking out a therapist that might help me with all this, do you have good supports? I’m here for you if you need someone to talk to 🙂