Mgus

On 2/6/2008 Optimist1 wrote:

Hi to all.  Have not posted here for a while, as I have been more active in the Yahoo MGUS group, which I recommend if you have not found it.  There are some good suggestions for things you can do to be well.  Not to change the MGUS, but keep you all around well.

 I have now had this diagnosis (IgG lambda, kappa light chains (whatever they are)) for about a year.  My M spike is a bit higher than last year, and now actually I have two of them.  So I will go to see a hematologist.  And my thyroid is also acting up, so I will go to see an endocrinologist.  But the truth is that if I were not having regular physicals I would know none of this, cause I feel fine. Though I also now know that I have a bit of a compromised immune system, which explains lots of niggling things I have had my entire life.  All niggling, fortunately!

My doctor says it is more likely that I will reach age 90 than that he will. (So I am wondering what is wrong with him!!)

Be well, think positive and best wishes to all!!

 

Hi,

I just found this group. Its nice to read about others that feel the same as I do. I was diaognosed with MGUS last year. It took almost 4 months for them to confirm that I didnt have active Multiple Myleoma which was gruling to have to wait for the results.

But I do agree that it is like living with a dagger over your head, at least in the beginning. I am 45 and have one daughter who is 25 and one who is 11 which as I was going thru it prayed that I would be around long enough to raise my younger one. I have Sjogrens Syndrome too which complicates things. All stress related stuff affects both diseases; how do you live with absolutley no stress?

But one year later I only think about it when I am close to having my blood drawn or I hear of someone having cancer. I have the Light Chain, a high M Protien..and was at 3-4% at my last test. After living with an auto immune disease for the past 12 years I am learing to manage my addition. I went to a MM meeting with a friend who is in stage 4 MM, I will not return. 

Best wishes to you all, thank you for sharing your stories. 

I have Celiac disease so I go to Celiac.com and read the articles.  I found this one and thought some of you may be interested.

"In another publication from the database at PubMed.gov (Gut. 1976 Sep;17(9):735-9.), a study that showed that when a patient with MGUS and Celiac Disease was put on a gluten-free diet the monoclonal proteins entirely disappeared by the end of 3 years! Hence you can imagine what big news this is to all the MGUS patients, on the various online MGUS forums. Here is the suggestion that Celiacs might avoid becoming MGUS patients, that MGUS patients might perhaps avoid progression to multiple myeloma, and that multiple myeloma patients might have halted or slower progression of their disease, simply by being on a gluten-free diet! This is indeed big news!"  For more info go to Celiac.com, or ask a qualified physician.

Some of you have talked about autoimmune diseases.  I don't know if you have been check for Celiac disease or not but it is the most common autoimmune disease.  I have had it for over 21 years and was just diagnosed last summer.  Doctors think it is rare but 1 in 133 people actually have it, and 97% of the people are undiagnosed.  Being undiagnosed does cause cancers, vitamin deficiencies, and many other complications. If you have MGUS it would be worth being checked for Celiac especially if a gluten free diet can halt or slow the progression of MGUS.

On 4/22/2007 Chellybell wrote:

Hi Cynthia Rose,

I haven't taken any anti-depressants, but I
do have the lovely MGUS.  Some positive things...?  I'm still
here, still healthy, and my levels are stable.  You may be
reassured to look up some of Dr. Robert Kyle's studies--he's with the
Mayo Clinic and is the world leader in MGUS studies.  I actually
had the pleasure of speaking to him about my case, and he was able to
reassure me, based on my test results, that my chances of moving into
myeloma were very small.  His main advice?  To keep my body
in outstanding physical condition, through diet, exercise, sleep, and
hydration.  He said if the time ever comes, I should be ready to
fight as hard as I can and that people in peak condition seem to do
quite well.  Hope this lifts your spirits.  Hang in there,
Cynthia Rose.  Things will settle down, once you have some time to
adjust.

 

Michelle

Hello Michelle,

Where could I find information on Dr. Robert Kyle's work?

thanks,

bonnie 

On 12/16/2005 Chellybell wrote:

I am a 33-year-old mom who just found out I have MGUS. Nothing else seems to be wrong with me, thankfully, but I am SO scared, especially after doing my research. None of my friends or family seem to really understand the "ticking time bomb" I feel is inside me. Nor do I want to explain. The oncologist gave me a lecture about "sweeping this under the rug" and getting on with it--life, I guess. I am a single mom with no one to take care of my kids but me if anything should happen. I would just love to have someone to talk to. Michelle

  You don't need to be very concerned & allow yourself to get overly  distressed about this. MGUS affects many of we women (who also      tend  to get the majority of the inflammatory arthritides - diseases like   lupus, rheumatoid arthritis, psoriatic arthritis & other inflammatory diseases ) AND along with disease severity you CAN get what's called   an M spike on a serum or urine protein electrophoresis gel test. This M spike corresponds to a protein that yes - IT  IS found in patients with Multiple Myeloma ( a form of cancer)  BUT for many of us we only have     a small -  or half "M-spike".  This spike of OURS might be due to the severity of another "disease process" while having nothing to do with cancer at all. It is true that 1 out of 10 persons who has MGUS goes on   to develop Multiple Myeloma, but this leaves a great many of us who will never have to deal with that!!   I've had this bizarre diagnosis for 3         or 4 years now & while it was unnerving at first - now - I look at it more as just a marker showing up because the inflammation associated with  my rheumatoid arthritis UNFORTUNATELY for me, is very active. As for me, I no longer look at MGUS as the onset of cancer. (multiple myeloma or any other  kind)  I hope this eases your mind somewhat about this diagnosis. It might be a kind of red flag about an inflammatory illness you are already aware of.  If not, at least now you know that the medical specialty you MAY need to turn to is rheumatology so that you can be diagnosed & treated properly.