New MGUS Study/Disease Association

http://podcasts.mayoclinic.org/2009/09/04/disease-associatio

I found the linked article interesting.  I have MGUS (IGG KAPPA) and can relate to more than half of the top 20 diseases related to MGUS. Gasp!

Hugs,

Amy

Amy

Alhough as mentioned, this may be too small a sample size, I ( stable IgG kappa MGUS) find this study to be encouraging.  Due to the prevelence of this plasma cell dyscrasia in the over 50 population (and even higher in those 60 and over), we are probably going to find a lot of these other conditions to be co-incidental. We tend sometimes to assume that if we have one thing, therefore we are going to get another.

 I will, however, be sure to discuss with my primary Doc  increased risk for fractures and blood clots!

Thanks so much for this, Amy

NanLiz

Hi Amy,

I too have IGG Kappa MGUS and that looks very familiar. Those are all things I have found in my search for why I feel like crap most of the time. Looks like MGUS may be a little more vicious than we were led to believe.

On Mar 04, 2010 9:12 PM stevem57 wrote:

Hi Amy,

I too have IGG Kappa MGUS and that looks very familiar. Those are all things I have found in my search for why I feel like crap most of the time. Looks like MGUS may be a little more vicious than we were led to believe.

I am totally perplexed as to why they do not treat MGUS....I wonder if they do not know as it would seem logical to treat a disease in the early stages.  I truly believe that a lot of MGUS patients have MM but the doctors go by their silly rules. How can one have a crumbling spine, loss of bone, severe pain and many other problems and not be ill....This is one thing I am going to look into more.  My cousin was diagnosed with MGUS but took natural treatment before it became more serious and he is in remission...MMS

NanLiz - I am always alarmed when doctors go on their song and dance about how "common" MGUS is.  "3% of the population over 50" they go on and on ad nauseum.  Hmmm....that must mean 97% of the population over 50 don't have it. 

Why don't we hold their feet to the fire a bit more when they try to brush off MGUS like it is as prevalent as the common cold or something.

Hugs,

Amy

OMG...and I'm a teacher!! "Doesn't have it" I meant to type!

I agree Steve.  I even have the retroverted uterus!  How bizarre.

Exactly my sentiments MMS.  This is one reason I am so excited about the NIH study that will launch this Spring or Summer.  They will be tracking the disease progression of MGUS and SM patients over time. I have signed up for the study. 

I say Hooray for the 97%!!!  Bless them for they will have to deal with other struggles.  From what I have been able to determine, any disease that affects 3-5% of the population will co-exist with many other conditions.  The study you cite, Amy, seems to say that when they looked at large numbers, only a relatively small number of conditions could not be explained away by mere coincidence, notably fractures and blood clots (not exactly small change to be sure).

Regarding the treatment of MGUS, what I have been told is that most hem-oncs believe that not only has it not been proven to help, agressively treating at this stage may actually adversely affect us if/when we actually need it.  Sort of like bringing out the "big guns" now may actaully shoot us in the foot in the unfortunate and unlikely (approx 1% per year risk) probability we may convert from MGUS to MM.  It is not like removing a small skin lesion to prevent malignant melanoma, or snipping polyps to prevent colon cancer.

I don't know, I am merely a student of all of this.  So for me now, until convinced otherwise, it is regular follow-up,  low dose aspirin, healthy diet, exercise, meditation, calcium, Vit D and C and curcumin. I will NOT let this rule my life, stressing out between labs, bone marrow biopsies and x-rays .  I am also in a MGUS study at my cancer center.

Love and Luck to all on this board!

NanLiz 

Hi Nan Liz - I agree. I too have read where they want to delay an offensive until the big battle has begun....which makes sense.  You surely have a healthy attitude about this MGUS stuff! Kudos to you.  I'm not there yet.  Guess I'm still ticked off about it...not to mention the constant back pain and various other ills which serve as a constant reminder to me that all is not well.

Love backatcha,

Amy