Robert Kyle, M.D., is a pioneer in the study of blood disorders. His work documenting patient histories, archiving blood samples and observing vast numbers of patients with plasma cell proliferative disorders has greatly contributed to the understanding these conditions and changed the practice of medicine. Dr. Kyle’s work has led to the classification of these disorders into groups:
- Benign — monoclonal gammopathy of undetermined significance
- Intermediate — smoldering multiple myeloma
- Severe — multiple myeloma
Now, Dr. Kyle, and other researchers at Mayo Clinic have published a new study that sheds light on the presence and evolution of monoclonal gammopathy of undetermined significance (MGUS) in the general population.
MGUS is a blood disorder that occurs when there is over abundance of one particular protein – M protein — in bone marrow. In rare cases MGUS can be a precursor to cancer, such as, multiple myeloma or other serious blood disorders.
The first-of-its-kind study makes use a 40-year history of research on MGUS and multiple myeloma to describe how people move through a series of states beginning with no disease to the development of MGUS and possibly to the development of cancer. To do this, researchers used data from multiple Mayo Clinic registries including the Rochester Epidemiology Project.
Researchers posited that if almost no one dies of MGUS and the number of people in the population with MGUS changes very little with age — both numbers are well known — then the number of new cases per year must be small. Secondly, that if there are a lot of people with MGUS but almost no new cases, then most people must have had the condition for some time. Their challenge was to quantify the small number of new cases and the amount of time that people had lived with the condition. Their finding on the amount of time was a surprise.“We found on average that most people when diagnosed had MGUS for 10 years,” said Terry Therneau, Ph.D., lead author of the study. “Over half of women diagnosed with MGUS at 70 years had the condition for more than 10 years, including 28% for more than 20 years. An estimated 55% of men diagnosed with MGUS at 70 years have had the condition for more than 10 years and 31% had it for more than 20 years.”
Other findings included: the annual incidence of MGUS in men is 120 per 100,000 at age 50, which increases to 530 per 100,000 at age 90. The annual incidence in women is 60 per 100,000 at age 50 years, which increases to 370 per 100,000 at age 90.
“Most research studies will provide a targeted look at one particular part of the disease process and simply cannot step back to view the whole,” says Dr. Therneau. “It’s like trying to deduce a house from pictures of one room. This study gives us a picture of the whole house.”
The study is available in the online edition of the journal Mayo Clinic Proceedings.
This was so enlightening. My friend just died at 70 yest. She was diagnosed with MGUS about 8 yrs ago. She had a Dr at Bryn Mawr Hosp, which is highly regarded in the Phila area. He tested her every year and he said her numbers were good. She had been diagnosed when she had severe back pain. Various things were tried and tests were taken. An x-ray showed 3 bone fractures—by then they were almost healed. She was fatigued for all these yrs. About a yr ago her thyroid stopped working.
Suddenly around Thanksgiving, strange things happened and she got worse. They found growths on her liver, then she went to Fox Chase Cancer Hospital. They determined she had cancer of the liver, kidney, bladder, lungs, and lymph system. It took 7 weeks of tests and procedures and in the eighth week she went downhill quickly and died. I don’t know if a look at her records would help your study. It seems the MGUS had something to do with all this. I wish she had come there to you.
Thank you for your time, Peg Savage
My son has MGUS ,he has gotten worse in the past 3 months. He is only 44 yrs old. No one here seems to understand , he is in a lot of pain , very depressed and losing his will to fight. How do we get him to your program????
Drs tell him to stop trying to work, that this will keep getting worse. He can not afford not to work and needs help now .
Patients can request an appointment at Mayo Clinic by email or phone. Our appointment page is at http://www.mayoclinic.org/patientinfo/appointments.html
A physician referral is not necessary.
I was diagnosed with MGUS 10 years ago when I was 38 years old. I believe when diagnosed I had had the illness for a number of years prior because I had had the symptoms for years. I often read that doctors believe MGUS has no symptoms, but when I read information from other people diagnosed with MGUS we all seem to have very similar symptoms or are all suffering from another illness that is yet to be diagnosed. I remember the specialist who I first attended after being diagnosed, he advised me that there was something else that was yet to be determined that was the cause of all of my other symptoms. When a show of rheumatoid factor was found in my blood a few years later he thought it was that but it was not found in my blood again.
My symptoms are;
Body bone & muscle aches and pains (often to the point where it becomes very difficult to exercise or the down time due to pain after exercising makes it not worth exercising), burning hip joints, back pain, numbness hands/legs/feet, swollen feet, continual tiredness, foggy at times and difficult to concentrate, exhaustion, lack of energy, dizziness, head aches, eye issues, weight gain etc.
I have found over the years these symptoms have become worse. To help me remain mobile and reduce body pain I receive massage therapy on a 2-3 week cycle.
What causes MGUS? I was advised by a specialist that chemical exposure may cause it and that it is not hereditary? Two of my sisters (one younger and one older) also have unusual blood results, they are yet to be diagnosed with a condition relating to the results.
Dr. Robert, Kyle,
I just watched Robert Kyle, MD video on the 40 year study on MGUS.
I was dx with MGUS at age 37. ( feb 2002)
If you are doing more research studies and are interested in my Journey with MGUS.
Please feel free to contact me.
Dawn