Good day everyone. I am new. I am scared and I am tired.
I have lived my entire life with overlapping autoimmune diagnosis. I have had a good life but it has been allot to learn and navigate.
More recently, since 2021 I learned of my next new thing at the time, called Monoclonal gammopathy of unknown significance (MGUS). It was during Covid so it was kind of put on the back burner by my regional centre after reviewing my labs etc.
In the Spring of this year my Rheumatologist wanted the Monoclonal gammopathy of unknown significance (MGUS) revisited by a hematologist oncologist. I saw him about a month ago where he said that nothing had changed. Wow, what a relief. I was scared. He did however want more bloodwork and a urine test. I saw my pain specialist a couple of weeks ago who stated that one of those tests was higher than it should be. I talk with my hemo onc by phone on Monday. I am scared again.
I think the most difficult thing though, that brings tears to my eyes as I type, is that I fear I am just too darn tired for anymore. I am just so tired of the battle and this battle I think might be the biggest one yet. Even if the results he sees are of no consequence him at this time, I have done enough reading to know that this is what is called the watch and wait. I feel like I have already given up. I have never felt this way before and I can’t figure out why.
Being that Monoclonal gammopathy of unknown significance (MGUS) is about the immune system it would stand to reason that many of you good people understand the ongoing everyday of autoimmune disease. In my life there has been several life threatening situations. I just kept going. Never thought twice about it.
So why am I feeling so different; discouraged; fed-up; and over it now? Is this a normal response? Did any of you feel this way? It is a real concern, and a scary feeling. I can’t win if I don’t even play the game. Thank you, Teddy
Hello there @Teddy, welcome to the forum. I’m glad you found us here, you’ll see many others living with Monoclonal gammopathy of unknown significance (Monoclonal gammopathy of unknown significance (MGUS)) who share their experiences if you check the search box at the top.
Although I don’t know much about Monoclonal gammopathy of unknown significance (Monoclonal gammopathy of unknown significance (MGUS)), I really resonate with how you describe living with overlapping health concerns. I was diagnosed with a different blood disorder called Polycythaemia vera (Polycythaemia vera (PV)) in 2023 and its treatment brought on extreme fatigue. This was on top of previous chronic ailments, including PTSD. It really felt so overwhelming. There were points where my fatigue was so strong that I wondered if I could even move enough in the event of an emergency, it really got me down.
While Polycythaemia vera (Polycythaemia vera (PV)) and Monoclonal gammopathy of unknown significance (Monoclonal gammopathy of unknown significance (MGUS)) present differently, I think the idea of watch and wait AKA active monitoring can come to feel reassuring. My own treatment involves monthly blood tests, which initially were fortnightly and can also involve having excess blood removed (a side effect of Polycythaemia vera (Polycythaemia vera (PV)), not Monoclonal gammopathy of unknown significance (Monoclonal gammopathy of unknown significance (MGUS))). I used to hate all the testing, the frequency of it, how it kept my blood disorder ‘live’ in my mind the whole time as I felt like I was constantly awaiting the next test or result. But it came to feel rather comforting and gave me regular updates on how my body was doing. My mind followed along, surprisingly.
While I’m not a doctor and wouldn’t want to offer false hope, maybe you could come to reframe your watch and wait treatment as a sign that the Monoclonal gammopathy of unknown significance (Monoclonal gammopathy of unknown significance (MGUS)) is behaving and not needing any intervention beyond blood testing? Apologies if I’ve misunderstood. My monthly blood tests have just been changed to every other month as my blood cells have stabilised a bit, and it feels like a relief! Almost like it’s becoming more like watch and wait.
Perhaps on some level you know that the Monoclonal gammopathy of unknown significance (Monoclonal gammopathy of unknown significance (MGUS)) is under control for now and your mind is filling in the gaps with questions? I felt like I went through a sort of grief after my Polycythaemia vera (Polycythaemia vera (PV)) diagnosis made sense of a lot of weird old illnesses I’d had over the years. While I’d never wish these disorders on anyone, at least they’re being kept an eye on by specialists right? That’s got to be some sort of relief.
Maybe you’d like to speak to the lovely specialist nurses at Blood Cancer UK? You’ll see them around the forum too but they can be called on 0808 2080 888. And just in case you’d like to read more about Monoclonal gammopathy of unknown significance (Monoclonal gammopathy of unknown significance (MGUS)), here is the Blood Cancer UK information about it: MGUS (monoclonal gammopathy of undetermined significance) | Blood Cancer UK
Do please keep us posted about how you get on @Teddy and have a look around for others on the forum living with Monoclonal gammopathy of unknown significance (Monoclonal gammopathy of unknown significance (MGUS)).
Thank you for your post and sharing how you are feeling with us.
It is understandable that you are scared and tired, you have been through so much. It is good that you are talking about how you are feeling, this is so important. Many people with Monoclonal gammopathy of unknown significance (MGUS) feel this way and hopefully will share their own experience with you here. I have enclosed some information about looking after your mental health with Monoclonal gammopathy of unknown significance (MGUS) which you might find helpful to read MGUS and mental health
I hope by talking to your haematologist on Monday, they will be able to reassure and explain to you what your blood results really mean for you.
Look after yourself and let us know how you get on.
Hello Duncan, so lovely to read your words of encouragement. These situations are such a lonely place to be sometimes. It helps more than you know to share. It helps me to believe I can move forward even if it is at my own pace. I have read about your diagnosis of Polycythaemia vera (PV), and am sorry for your newest learning curve too. I too have many symptoms that are as complicated as they are uncomfortable. In fact so many that sometimes I worry that I am not painting a good enough picture for my physicians because I just plain forget to mention them all or feel not all symptoms could possibly need be discussed. I await my call, and hope to learn enough to ease my fears. I will keep in touch as I invite you to as well.