Connect
← Return to MGUS with bone pain?
Discussion
Comment receiving replies
I was recently diagnosed with mgus, and ptch1 gene mutation and mthfr gene mutation and I have so many questions and concerns as I am typing this my fingers are in terrible pain,and my feet and lower back are the same way. Also I have been experiencing pain and this weird popping in my right rib cage. I've been to 2 different oncology/hematologists who seem to think these diagnosis are not a big deal but this pain is new and is all I can think about. Also experiencing numbness and tingling in my fingers on my right hand and severe brain fog. Any advice would be greatly appreciated. P.S. I'm brand new here and grateful to have found you all!
Replies to "I was recently diagnosed with mgus, and ptch1 gene mutation and mthfr gene mutation and I..."
Sorry to hear things aren’t going well right now. I’ve had slowly worsening symptoms for some years before I finally had bone marrow biopsy/aspiration (MGUS just below SMM), and they’re still progressing. I went through a stage of symptoms you’ve described, along with moving on to hearing and vision changes, and some other symptoms.
It might be worth finding out what kind of MGUS you have, considering the different types can (but not always exclusively) lead to certain clusters of symptoms (and thus possibly helping you to understand the what and why of your experience, which may in turn alleviate some of the concern associated with marching into a new world of symptoms as well as elucidate possible specific questions to ask your specialist.
In my case, my focus is on functioning day to day within the limits of what the symptoms impact on (I don’t think often about the disease itself because I know nothing will be offered to help me while it’s classified as MGUS; a kind of ‘don’t worry about what you can’t change’ approach - but nevertheless it still can make for a painful day here and there). I personally recommend finding some decent research articles on the type of MGUS you have, and growing your knowledge to facilitate a greater ability to have more informed choices 🙂🌺
Connect
Welcome to Connect @tellis383. I’m happy you found us too! It helps to find that you’re not alone with your new diagnosis. There are a quite a few members in Connect who have MGUS and also experiencing the similar pains that you’re describing. It’s awful when your doctors don’t seem to be taking this seriously.
MGUS-Monoclonal gammopathy of undetermined significance (MGUS) is a condition in which an abnormal protein — known as monoclonal protein or M protein — is in your blood. Usually patients diagnosed can go years without any issues but this can progress to more serious health issues.
A little reading for you.
From Mayo Clinic:
https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362
~~~
Healthline.com:
https://www.healthline.com/health/how-serious-is-mgus#faq
~~~
Initially, from my understanding, most patients aren’t even aware there’s an issue. But because it can progress over time, some of the changes that doctors should be on the lookout for are bone pain, fatigue or weakness, unintentional weight loss, fever or night sweats,headache, dizziness, nerve pain, or changes in vision or hearing, etc.
It sounds like these pains, brain fog and unusual symptoms are pretty recent changes for you. There are three types of MGUS, each associated with an elevated risk of certain health conditions. Knowing the particular type of MGUS can classify a patient as low, medium or higher risk for developing conditions such as multiple myeloma.
Have you mentioned this new pains and brain fog to your hematologist oncologist? Were you given a type classification for your MGUS?