MGUS and Chemotherapy

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.

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.

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.

@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

Good morning. Yes, I’ve been checked for thyroid disease several times…both blood tests and ultrasound. Both have been negative. But you are absolutely right, the symptoms are very similar!