MGUS? Scared

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MGUS? Scared

by Carly31 on Sat Jan 12, 2019 09:24 PM

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Hello, 

My name is Carly,  I am a 31 year old female in the middle of the diagnostic process. In the last 3 months I had one enlarged lymph node in neck with no malignancy, muscle twitching, joint pain, back pain and hoarse voice off/on. My blood tests showed slightly high IgD at 200, slightly high free kappa light chains at 20, albumin of 3.3, and no M spike noted in electrophoresis. And the Kappa/lambda ratio was normal. 

I have had over a year of high platelets and high WBCs. But I think its significant to point out that my WBCs have always been near the high limit since I was a kid. The oncologist I have been seeing sent me for a PET scan and it was clear. I have panicked recently as these blood results seem to explain some physical symptoms I'm having that are intense and painful. 

Have any of you seen MGUS or MM without the M spike? Does anyone feel these symptoms and lab results are familiar? I would so appreciate any knowledge or input. 

Thank you. 

RE: MGUS? Scared

by Dad1215 on Thu Jan 17, 2019 07:07 PM

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You might want to take a look at "Margaret's Corner" a website run by a woman with smoldering myeloma. She has several artiles on MGUS - just do a search and you will find pages of articles.

http://margaret.healthblogs.org

Best regards

RE: MGUS? Scared

by stevem57 on Tue Mar 05, 2019 07:38 PM

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Hi Carly,

There is a MM without an m-spike, I believe the urine analysis is the way you test for it. Have you done a 24 hour urine test?

Hang in there, I have had smoldering myeloma for 10 years and my pain is much better now. Things can improve, don't be scared just make sure to get answers.

RE: MGUS? Scared

by CathyinNJ on Thu Jun 27, 2019 09:54 PM

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Hi Carly, I don't know if this is significant but many years ago when I was in my 30's, I had slightly elevated WBC and Platelets. The hematologist I saw at the time said it was called Polycythemia Vera. I was also diagnosed with Epstein Barr. It lasted for about 7 years and then just went away. No treatment ever done, we just watched it..... Don't know if my answer will help you.

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