[Rare Bird]

MGUS, possibly Waldenstroms

by Rare Bird on Thu Apr 28, 2016 1:02 pm

Dear all,

I, too, am new to this arena. I started having numbness in one leg last May and low back pain. After MRI, I had 6 shots for the back issue with no relief, and numbness starting in right leg. Finally my pain management doctor ordered me back to the ortho guy, and I had an EMG, and did not pass the test in both legs.

Referred to a neurologist and he found with the electrophoresis that I had a spike in the IgG - gamma. I have had the details scan and received Reclast (zoledronic acid) in February. Can't seem to get my vitamin D up. Also have no gallbladder, so have some stomach issues with certain things that can lead to diarrhea. Is this also a symptom of MGUS?

My last SPEP increased slightly this April. My back pain and numbness are under control with gabapentin x2 a day and meloxicam. However, my hem/onc doc said that my blood results point towards Waldenstroms disease since I had an IgM kappa monoclonal band detected. She has me in the MGUS category leaning towards Waldenstroms.

I will be seeing a specialist for the neuropathy at a major medical center in Indianapolis to see if they can correlate or help the neuropathy. Sorry to write so much ;-( Just like the rest of you, I'm trying to get a handle on this diagnosis.

Does anyone out there have any suggestions? Are there any new treatments? And does anyone have this IgM kappa monoclonal band? And what does CRAB stand for?

Looking for some support and answers,
Rare Bird

(I call myself this as both the neurologist and hem/onc person never have had patient with rarity - Waldenstroms)

[Multibilly]

Re: MGUS, possibly Waldenstroms

by Multibilly on Thu Apr 28, 2016 11:26 pm

Hi Rare Bird,

Sorry to hear you are having so many issues.

An IgM monoclonal band can suggest several things. I would suggest you read this article to get a better understanding of the possibilities.

https://myelomabeacon.org/forum/smoldering-multiple-myeloma-igm-kappa-t5523-10.html

I would also really recommend getting in touch with a top multiple myeloma specialist that can help with your diagnosis. Here is a link to some places in Indiana that have multiple myeloma specialists (note that these specialists are a special class of hematologist/oncologist that work with many patients that have multiple myeloma and related disorders like the ones outlined in the link above). There might be some folks on the forum from Indiana that can also recommend some specific specialists.

https://myelomabeacon.org/resources/treatment-centers/#Indiana

This is absolutely the best advice I can give you as a next step.