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Anyone else have Symptomatic MGUS?
Blood Cancers & Disorders | Last Active: Nov 28, 2023 | Replies (73)Comment receiving replies
This sounds very frustrating for you. Have you gotten second opinions and thought about going to some of premier research organizations like Dana Farber? Or have you tried to find out about research trials you could be part of? There are lots of articles about MGUS out there. Dr. Drurie has a short YouTube video out there about some of the symptoms linked to MGUS.
I was diagnosed less than a year ago, and they took it seriously and did all the work ups. I have bone pain, frequent fatigue, don’t recover from infections as readily as I used to. They are checking me every six months now for any changes. They began with every three months. I have a high FLC ratio and also a low WBC. My doctor is treating me with high doses of oral B12, which has helped bring my WBC up slightly. They are watching and waiting. Right now I just try to eat healthy, exercise a reasonable amount and keep a positive attitude. I am 72, an age where MGUS is a more common occurrence.
Replies to "This sounds very frustrating for you. Have you gotten second opinions and thought about going to..."
I, too, am 72 and was diagnosed 3 months ago with MGUS with iron
defiency. Had iron infusion 2 months ago. No symptoms, except for anemia. My mom died this past March from multiple myeloma. I am terrified that I will eventually follow in her footsteps. I was her caregiver, so I know what to expect. Prayers for everyone with this dreaded disease.
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Hi there nancy1900, thank you very much for your kind reply and wonderful suggestions. I want to apologise - I am in Australia, and I am working with the public medical system so I do not have access to a second opinion without a long wait list that would leave me without any monitoring by haematology for over a year (currently I have a 10 min consult with the haematologist each 4-5 months, which has been the case since august 2021). A research university in another state said I would be a perfect candidate for their MGUS study, but my doctors refused to swap me to the haematologist who was the lead in my local hospital, which meant that the potentially helpful treatment was effectively out of reach (the team in Melbourne tried really hard to get me in their trial, but the team at my local public hospital just wouldn’t play ball, and threw all obstacles they could to prevent having to swap me to the other haematologist).
I’m really sorry to hear you’re also having symptoms, and I hope your team continues to take it seriously and follow up. Thank you so much for the suggestions on interesting things to follow up on - I really appreciate it!
Stay positive, and thanks again for your support 🙂