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Waldenstrom's, CLL or MGUS?
Hi--I was diagnosed with WM in the summer of 2023 by a hematologist. My PCP, however, thought it might be CLL. A second opinion (online) with Dana Farber said it might be WM but possibly CLL. And then my new hematologist thinks it might be MGUS based on my most recent bloodwork. Who should I believe? And how exactly am I supposed to lead my life with this level of uncertainty? I have not had a bone marrow biopsy, have no clinical symptoms of WM and only modestly elevated lymphocytes. I am a vaccine proponent but my lymphocytes only increased after receiving the Moderna Covid vaccines.
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@jlh1
Greetings, and welcome to Connect.
How frustrating when you get so many opinions about blood abnormalities. You don’t know what to worry about so I suspect you worry about all of them.
When I first read about MGUS online, it’s like reading an annual evaluation at work. My boss might say 20 really nice things about my performance but it’s that one area in which I need improvement that I obsess about.
It’s clear that you have to get a solid diagnostic workup to know what you are dealing with. My PCP was transparent with me that she knew very little about blood disorders. I appreciated her candor. She sent me to an oncologist/hematologist for a thorough diagnostic workup because I have the M paraprotein in my blood. She helped make the connection by making a referral to a trusted cancer treatment practice located close to me. They took it from there.
MGUS is not cancer, but as a MGUS patient, my health is monitored closely to ensure that my MGUS does not progress to Smoldering Multiple Myeloma or Multiple Myeloma. Statistically, the odds are in my favor that it will not progress in what is left of my lifetime, but if it does, the treatment response is very encouraging.
I would think that you would benefit from a good diagnostic workup that will give you a definitive diagnosis.
Here is some good information about MGUS. Don’t be discouraged, the right treatment provider is out there for you. If I were going to get hip replacement I would want to find the surgeon who does many hip replacements a week, rather than the gal or guy who did an ortho rotation ten years ago. You need to find the right specialist.
Did your bloodwork indicate the presence of the M paraprotein?
I’m glad you found us. We have a wealth of experience here among our members and I’m sure they will be helpful.
Patty
https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362
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6 Reactions@jlh1 Welcome to Mayo clinic Connect. Surely that kind of "it could be this, but could be that" discussion will bring on many doubts!
As @pmm commented, some specialists may not have the experience or education to adequately monitor/diagnose your situation. Are you near a large teaching hospital or cancer center? I found this source that might be of help to you: https://www.medifind.com/specialty/hematology
Meanwhile, take a deep breath. Relax. Don't go down the "rabbit hole" of Dr. Google, which may be very tempting!
Ginger
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3 ReactionsHard to understand why your Doctor won't do a bone marrow biopsy. My oncologist wanted a second biopsy during a visit and just asked me if I had a few minutes and he did right there in about 20 minutes. Maybe you need a new doctor with the experience.
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2 ReactionsI thought the bone biopsy was painful but needed for diagnosis
As we know pain is tolerated individually. I did have two BMBs. The first one seemed to be by someone that didn't do them often... they "cored" me 3 times. It felt like a ton of bricks (really heavy but dull pain). I had pain walking for 1-2 weeks.
The 2nd was at Mayo where you could tell this was something they did all the time. I did elect to get meds that time. Zero complaints & I don't recall any after effects.
Hi jlh1,
In my case, after 6 months and many tests, I ended up being diagnosed with CLL, WM, and SMZL. It was not simple at all, and seemed to come down to expert opinions. It was not like taking a home covid test where the answer can only be binary. I wish.
My WBC was detected out of range (around 30k) in Dec 23 at a routine physical. I didn't have any symptoms. Over the next few months my platelets were dropping to around 100, and my WBC went over 50. There are many folks that have much worse numbers than I did. E.g. I thought WBC=50 was bad, but learned that some vastly exceeded 100; some had platelet counts far lower... of course, there are about 20+ other metrics we could discuss.
For me, the uncertainty was unsettling. It was nice to finally have a diagnosis after 6 months so that I could begin asking about and explore next steps.
Long story short, because I had a "triple crown" of diseases, the doc decided that I should go on Zanubrutinib. A forever pill (or until it stops working for me). It works now & all my metrics are within range.
Clarity & perspective substantially reduces stressing over it. It is a steep learning curve if you want to go down the rabbit hole of CLL, but if you are interested the mentors here have a wealth of knowledge. Good luck on your journey!