[Helene_Smith]

MGUS and learning

by Helene_Smith on Fri Aug 30, 2013 1:20 am

Initial diagnosis in March 2009, was found by accident. Severe stomach issues and diagnosis of Sphincter of Oddi Dysfunction lead to diagnosis of MGUS, Chronic Liver Disease, Adenomal FAP, and Endometriosis... complicated with Osteoarthritis of the spine, fibromyalgia and chronic asthmatic... I had never heard of this MGUS thing... but could tell the doctors were not exactly happy given the rest of the autoimmune issues... What is this "MGUS"? Why are drs telling me I'm very young to have this illness? Where did it come from? Why now am I being told its not an "if" you get cancer, but "you will" get cancer we just don't know when...? Well, what is my cancer going to come from? MGUS transition to Multiple Myeloma and the Adenomal FAP... bones/plasma and gut... Oh goodie.. Now comes the So what attitude as a long list of interesting things happened... 5 stomach surgeries/procedures March 2009, full hysterectomy Nov 2010, removal of approx100 pre and borderline cancerous adenomal polyps between 2011-2012, full colectomy Mar 2013 and told now high risk for pancreatic cancer due to polyp variant... 2nd SoD surgery Jun 2013... Fast forward Aug 2013 arthritis specialist, surgeon, and internal specialist have all noted a sharp rise in the light/heavy chain levels with stable IgG level... What does that mean? Is this why I'm getting increased bone pain? Where to from here and is this the beginning of a new type of journey? Any advise/guidance to this MGUS illiterate would be most appreciated and gladly accepted... I have been told that those with MGUS present with differing things that are autoimmune related and can mimic other illnesses easily.... So where to from here?

[Dianem]

Re: MGUS and learning

by Dianem on Fri Aug 30, 2013 3:07 pm

Hi Helene - Like you I have MGUS and was diagnosed the fall of 2011. My oncologist told me my type of MGUS (IgG) is symptomless and typically if have a symptom, it is most likely is related to my autoimmune disease (hypothyroidism). Since I visit her once a year, she also said if I develop bone pain, excessive bruising, fevers, and urine changes to contact her for additional testing. This summer I did have knee-leg pain and an MRI revealed a torn meniscus associated with hiking. Normally, I would have 'waited it out,' but with MGUS, I tend to be too cautious.

I don't know what the rise in heavy-light chains means related to your MGUS.
Since you've had various procedures along with arthritis, I question if they could affect MGUS? What is the next step? Take care, Diane