About POEMS Syndrome
Blood Disorder Causes Many Symptoms
By Mary Kugler, R.N., About.com
Updated: May 25, 2007
POEMS syndrome is a blood disorder that affects many parts of the body and causes many symptoms. It affects both men and women and usually begins after age 50, although it may occur at any age. It is not known exactly how often POEMS syndrome occurs because it is difficult to diagnose correctly. The cause is unknown.
The acronym POEMS stands for:
P – polyneuropathy, meaning nerve symptoms such as numbness, tingling, and/or weakness of the hands and feet.
O -- organomegaly, meaning enlarged organs, usually the liver, spleen, or lymph nodes. About 15 percent of people with POEMS syndrome also have Castleman's disease, a lymph node disorder.
E – endocrinopathy, meaning changes in hormone production. Symptoms such as diabetes, impotence, stopped menstrual periods (amenhorrea), low thyroid levels (hypothyroidism), and/or breast development in males (gynecomastia) may be present.
M – monoclonal gammopathy or monoclonal plasma proliferative disorder, both of which mean abnormal blood protein cells.
S – skin changes such as increased skin pigment (hyperpigmentation); increased body hair (hypertrichosis) on the face, limbs, and chest; skin thickening and tightening, swelling (edema) of the legs and feet, whitening of the nails.
Individuals may also experience fatigue, generalized aches and pains, or changes in vision, among other symptoms.
For information on diagnosis and treatment of POEMS syndrome, see the full article at About.com. For recent updates on various aspects of diagnosis and treatment, see Harry Ide's page of this website.
WHAT DO YOU DO IF YOU SUSPECT YOU HAVE POEMS?
I know of one POEMS expert in the world, and most of the POEMS folks in our group have seen her or had their doctor contact her. It took me three years before I found out about her; since then, I have met her three times. Nothing is worse than being misdiagnosed which leads to incorrect treatment. The POEMS doctor of the universe is as follows:
Dr. Angela Dispenzieri
Mayo Clinic
200 First Street
Rochester, MN 55905
Phone 507-284-9448
WHAT ELSE CAN I DO?
While waiting for an appointment, or waiting while a treatment is pending or in process, you can learn all about POEMS. If you are reading this you have already taken a few steps and are into my website which will educate you about POEMS in laymen's terms.
To be added to our list of POEMS patients by location, send the following information to harryide6@gmail.com
1. NAME
2. LOCATION
3. YOB (year of birth)
4. YEAR DIAGNOSED
5. SCT – Yes/No (if stem cell transplant, what year)
6. E- MAIL ADDRESS
Enroll in Smart Patients to communicate with POEMS people from around the world.
https://www.smartpatients.com/poems
We are proud to say we are non-medical experts. We have exchanged questions and answers for about 10 years. We know a lot, and we want to help you because we were all at the same stage as you at one point. We had just found out we had POEMS and we only knew of our own medical problems. We never heard of such an ailment before, we knew of no one else that had ever had the disease, as a matter of fact, we couldn't find anyone who had ever heard of such a strange medical problem. Smart Patients joins us together. We want to help anyone that we can because someone helped us! So sign up - just follow the direction and you are aboard. Welcome to our POEMS group at Smart Patients!