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← Return to MGUS and Chemotherapy
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Thank you Rae. I am not on any chemo. Went in because I wasn’t feeling good at all and couldn’t work out because of bone pain, high heart rate etc. Because my labs starting coming back not normal they sent me to a hematologist. My local hemoc doc thought it was Amyloidois. I went to Mayo and they are saying no. Just MGUS. But I am not well.
I go back to Mayo for multiple biopsies of my GI track in nov.
There is one test Mayo is waiting to get back called the FISH test as I came back with high risk for FISH.
I am just so frustrated because I have so many symptoms and nobody is giving me real answers to get better.
Replies to "Thank you Rae. I am not on any chemo. Went in because I wasn’t feeling good..."
@oliviahutson Let me add my welcome to Mayo Clinic Connect. You have had some great information presented here.
I know that usually our medical team adopts the watchful monitoring for MGUS, especially since it can go for a long time with no advancement of disease. That said, each case is different. How one is followed is so dependent on other presenting issues, and cobbling together an accurate diagnosis can take some time, let alone different tests.
How are you doing tonight?
Ginger
Are you seeing other doctors, such as a nephrologist, ophthalmologist, and gastroenterologist? I'm 70 and my oncologist still has me at MGUS (8 years, no treatment) even though my BMB was 15% plasma cells. My Kappa is about 300 and Kappa/Lambda ratio is 28, but I don't have bone lesions yet. New this year is stage 3a chronic kidney disease and dry macular degeneration; I have no risk factors so likely MGUS. My GI issues are mostly from 8 years of collagenous colitis. I have minor polyneuropathy but that is likely associated with celiac (15 years). It does suck getting sick and collecting autoimmune diseases, so I try to focus on what I can do. Which is most things, but with the occasional nap. There is a grieving process with new diagnoses and unknowns about what it all means. It gets easier.
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Hi Olivia. I’m so sorry you have no answers yet. I was in the hospital last year for almost a month, including 4 days in ICU, and they kept trying to blame it on COVID, which I had recovered from months before. But everything that happened to me just wasn’t adding up, and it wasn’t until Rheumatology team caught the MGUS in my blood work. I apparently have a unique case that attacks my kidneys and causes bruise-like rashes. Luckily, the chemo seems to be keeping it in check for now. I hope you have a good medical team that will hopefully find a diagnosis and develop an effective treatment plan for you. I wish you the best of luck.