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MGUS - because I'm often asked

October 28, 2003

Special note: I rarely respond to questions that are not in some way related to allergies. However, I am often asked questions about how to deal with MGUS because I mentioned that I have MGUS in a couple of responses. See:
Living with mold -- health problems and
MGUS, mold, and fungus on body organs

I will deviate from an allergy-related subject just this once in order to respond briefly to those who ask about this. Please realize that my expertise is in allergy. My response here is more on a personal than a professional level. Here is one of the letters I've received recently asking about MGUS:

Dear Allergy Nurse
Dear Allergy Nurse

I am a 59 year old woman also under a doctor's care for MGUS, with which I was diagnosed in October, 2002.

Will you please share with me some of the information you have investigated about the condition? I find the internet almost overwhelming with the chat groups and conflicting information about MGUS, and I am hoping you can assist me in finding out useful info about MGUS.

My doctor says that the condition cannot be reversed, and yet I have read that reversal takes place for 4% of those with MGUS. Below are some of my questions:

  1. Can MGUS be reversed?
  2. What are the best steps to take to ensure that MGUS does not develop into Multiple Myeloma, Waldenstorom's, Lymphoma, etc.
  3. Do those with MGUS have symptoms? (My MD also has told me that it is an asymptomatic condition, but I have read articles to the contrary on the web, including information about neuropathies and skin lesions).

Thank you much for your assistance. -- M.E.L., Florida

MGUS stands for Monoclonal Gammopathy of Undetermined Significance. MGUS is an over growth of one of the proteins produced in the bone marrow and circulated through the blood. In some cases (but not all) it can lead to Multiple Myeloma, or other forms of cancer.

As far as I know MGUS cannot be reversed. My oncologist did tell me he had one patient whose blood level went back down to normal on its own, but the reason was unknown. My understanding is that this patient will still be monitored occasionally to make sure blood levels are not rising again.

I don't think there are any steps that can be taken to ensure that MGUS does not progress to a malignant disease. Of course I keep my regularly scheduled visits with my oncologist. A healthy lifestyle of proper nutrition and regular exercise makes sense as well, though I am not as faithful in that area as I should be. My understanding is that MGUS itself does not produce symptoms.

When I first learned that I had MGUS, the physician who found the elevated blood levels thought it might actually be Multiple Myeloma. So I had the privilege early of facing the fact that I could have incurable cancer. Just as anyone would, I cringed and did not want to go there.

It took awhile to get past that. But my relationship with God has given me an internal resource that helps me handle the tough issues of life. I did not feel alone. I was thankful, of course, when I learned that it had not yet progressed beyond MGUS. But I also know that, should it progress, I will have the strength I need.

What is the best approach to dealing with MGUS? I've determined to live my life to the fullest every day. I refuse to allow worry of what could happen to steal my enjoyment of what is now. I am excited about my future. Whatever it holds, I intend to enjoy the best that each day has to offer. If MGUS progresses to a more serious disease at some point, that will be an opportunity to experience God's strength and comfort in a way I've not yet needed. But if his plan is for me to live to be 100 or more, then let's roll!



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