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Does anyone else have MGUS?
I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?
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Jeannie, I will be having my third BMB at Sloan on the 19th. My first was in my hometown of Asheville, NC. My Oncologist did it himself after providing me with 1 mg of Ativan IV push, 1 mg of Dilaudid IVP and topical Lidocaine. It was very comfortable, unlike my second one (first at MSK) which they only gave me a total of 1 mg of Ativan by mouth (PO) broken up in 0.5 mg followed a half hour later with another 0.5 mg and apparently some topical numbing factor. I'm sorry to say that was inadequate coverage. I found it to be very uncomfortable to the point of painful, but for a short duration. I have told my Provider that I do not want a Fellow/Resident doing my upcoming one - only a seasoned professional. I allowed a novice to practice on me the first time. Not again. Guess it depends on your tolerance for pain? I had no complications otherwise and no residual issues.
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1 ReactionI had mine and had no pain, no issues afterwards.
Positive thoughts❤️
Kathy
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1 ReactionHi. Thank you so much for your reply. I wish you the best. So happy to hear that you’re in remission. I will keep you posted. I appreciate your feedback. 🙏🏻🙏🏻
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2 ReactionsHi Jeannie. You have a number of tests coming up so I do hope you find some answers for your hip pain and whether it’s related to your MGUS or not. As you’ve seen in the forum, quite a few MGUS patients have symptoms that doctor’s don’t feel are related but the correlation seems pretty coincidental. Many mysteries with blood diseases.
To answer your question, no, I didn’t have MGUS. My special treat was Acute Myeloid Leukemia…which comes with its own level of excitement. ☺️ I was dealing with that exactly 5 years ago right now, and so thankful it’s behind me. Lots of chemistry poured into me and a bone marrow transplant has brought me to a durable remission!
Let me know how your tests come out! It can take a week or so for the complete biopsy results to be reported.
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5 ReactionsHi. Thank you so much for all that information. I really appreciate it. Mild sedation was not offered to me. They said they were just localize the area.
Do you have MGUS as well? I’m really hoping that I can figure out what is causing my hip pain. The hip pain radiates to my knees and down my legs. More prevalent at night.
Thank you again!!
Jeannie
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1 ReactionHi Jeannie, from my personal experience with 13 bone marrow biopsies and nuclear medicine testing, I would have had no problem returning to work the next day. You won’t want to be out in the school yard playing basketball for a day or so but most other activities return to normal. ☺️
The biopsy site will most likely be a little tender but shouldn’t be painful the next day. It feels more like a bruise. Depending on the biopsy site, you’ll lie on your side or your belly. The most common bone marrow biopsy site is the back of your hip bone (posterior iliac crest). Basically, near one of the large dimples above your butt.
This is done with an aspiration/biopsy needle so there’s no large, open surgical area. You’ll have a compression bandage on there for 24 hours… bandaid with a larger piece of gauze under for the compression. There shouldn’t be any residual bleeding; the compression is there just in case. After 24 hours you can shower.
Seeing that you’re having this done at a large clinic, did you opt for mild sedation for the biopsy?
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2 ReactionsHi everyone,
This has been such a great platform for information and support. Thank you everyone. My received a diagnosis of MGUS on 1/2/24. I am scheduled for a bone marrow biopsy, blood labs and a pet scan with nuclear medicine on March 13th at Memorial Sloan Kettering in Manhattan. Any advice on what I should expect? I'm planning to go to work the next day... I work with young autistic children... any thoughts?
Thans,
Jeannie
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1 Reaction@joyelizabeth Have you been formally diagnosed with MGUS? What tests were done, and by whom? If you have the diagnosis, please get to a hematologist oncologist who will monitor your condition. This is not the time for a general practitioner to be undermining you and minimizing the situation! Many times they do not have the knowledge base to adequately address MGUS.
Ginger
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1 ReactionThey do neither?
I have MGUS my GP is doing nothing just tell me I’m a hypochondriac can anybody help please with advice