Cleveland Clinic doctor using a stethoscope to check a patient.

POEMS Syndrome

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It seems like the tingling in your arms and legs is getting worse.

Walking is tougher, too. And so is keeping your balance. It’s even getting harder to comb your hair or make breakfast. But, so far, no one can figure out what’s going on.

This numbness, along with other symptoms, could be signs of a rare (but treatable) blood condition called POEMS syndrome. It’s caused by abnormal plasma cells in your blood. But it’s often misdiagnosed as other neurologic conditions. POEMS syndrome might be rare, but it’s not uncommon at Cleveland Clinic. We can quickly confirm a diagnosis and start personalized treatment so you can get back to living your life more comfortably.

Why Choose Cleveland Clinic for POEMS Syndrome Care?

Specialized knowledge:

POEMS syndrome is so rare that few doctors know about it. But it’s not rare at Cleveland Clinic. We’re at the forefront of innovative POEMS syndrome diagnosis and care. Our healthcare providers know what it takes to detect signs that are easy to miss. They’ll confirm a diagnosis and get you started with treatment right away.

Patient-centered care:

Cleveland Clinic offers the POEMS syndrome tests, treatments and support you need to get relief. Your care team of providers from different specialties focus on you and tailor treatment to your unique diagnosis and needs. Meet our team.

Demonstrated expertise:

Our experience with POEMS syndrome has helped many people with severe symptoms feel better. They’re back on their feet, working and spending quality time with loved ones.

Industry leaders:

Cleveland Clinic is a world leader in autologous stem cell transplants, a common POEMS syndrome treatment. This treatment uses a sample of your blood-forming (stem) cells to develop healthy plasma, which will give you relief from ongoing POEMS symptoms.

Virtual visits:

Sometimes you might not feel up to going to a follow-up appointment in person. Virtual visits let you meet with your provider online to talk about your progress from the comfort of home. You can connect through your internet service with a smartphone, tablet or computer.

National recognition:

Cleveland Clinic is a trusted healthcare leader. We're recognized in the U.S. and throughout the world for our expertise and care.

POEMS Syndrome Diagnosis at Cleveland Clinic

POEMS syndrome, a chronic (ongoing) blood condition, starts when your body makes abnormal plasma cells. These cells start to multiply out of control, damaging your organs and nerves. POEMS syndrome stands for the signs you may have:

Polyneuropathy: Nerve damage throughout your body causes pain, tingling and numbness.
Organomegaly: Organs like your spleen, liver and lymph nodes get swollen (enlarged).
Endocrinopathy: Your endocrine system releases too many hormones.
Monoclonal protein (M-protein): This protein builds up too much in your blood.
Skin changes: Your skin can get darker, thicker and have other changes.

Diagnosing POEMS syndrome isn’t always simple. While everyone with POEMS has polyneuropathy and an M-protein, other symptoms vary and can be similar to different neurological conditions. Our experience helps us know the signs that raise the likelihood of a POEMS diagnosis.

What to expect at your first visit

We know it can be unnerving to hear you may have a rare blood condition. And we’re here to help you feel comfortable moving forward with diagnosis and treatment.

That’s why the first step in confirming a POEMS syndrome diagnosis is learning more about you. It’s important for your care team to understand what’s been going on. So, during your first visit, your provider will ask you:

When you first started noticing symptoms.
What kind of symptoms you’re having.
If they’re getting worse.
How they’re affecting your life.
If you’ve had any other medical conditions.
If anyone else in your family has had an autoimmune condition.

You’ll also get a physical exam during this appointment. And your provider will order tests to help them learn more about your symptoms and what’s going on inside your body.

Testing for POEMS syndrome

To help us confirm a diagnosis, you may have one or more of these tests, depending on your symptoms:

Blood and urine (pee) tests: We check for levels of M-protein and another protein, vascular endothelial growth factor (VEGF), which increase with POEMS. We can also use these tests to check hormone levels.
Imaging tests: X-rays or CT scans help us look for bone lesions caused by the plasma cells and other things, like an enlarged liver, spleen and lymph nodes.
Electromyogram (EMG): An EMG checks how well your nerves work and helps us see if you have polyneuropathy.
Bone marrow biopsy: We can do a bone marrow biopsy to see if you have too many plasma cells and/or abnormal-looking ones.
Breathing tests: Pulmonary function testing helps us check how well your lungs work.
Echocardiogram (Echo): An echo helps us get a closer look at your heart to see if its valves and chambers are damaged.

Meet Our POEMS Syndrome Team

Cleveland Clinic believes a team-based approach to care gives you the most personalized treatment and support. Your care team will include healthcare providers from different specialties based on your unique diagnosis and needs. Your team could include:

Hematologists.
Neurologists.
Endocrinologists.
Dermatologists.
Nurse practitioners.
Physician assistants.
Care coordinators.

Providers Who Treat POEMS Syndrome

Locations

Our healthcare providers see patients at convenient locations in Northeast Ohio and Florida.

POEMS Syndrome Treatment at Cleveland Clinic

It’s important to understand that POEMS syndrome affects everyone differently. The ways you can get to remission (no flare-ups) can be quite different, too.

We use what we learn from your health history, physical exam and test results to make sure you get the most personalized care. You may have only one type of treatment to manage your condition, or you may need a combination of different ones, like:

Physical therapy

Our expert physical therapists focus exercises on nerve weakness to help you get stronger and more mobile.

Radiation therapy

Your care team may recommend you have radiation to destroy abnormal plasma cells if they’re found in limited spots.

Chemotherapy

We may use medications (chemotherapy) to slow down the growth of the abnormal plasma cells or to destroy them completely. Your care team will decide which drugs may work for you.

Autologous stem cell transplant

You may need an autologous stem cell transplant to kill abnormal plasma cells and rebuild your bone marrow with your own healthy blood stem cells. We remove stem cells from your body. Then, we destroy the abnormal cells with chemotherapy and return the healthy cells to you intravenously (through a vein). The new stem cells should then grow into normal bone marrow cells.

Taking the Next Step

Learning you have a lifelong, rare blood condition can change your world in a second. But while you may always have POEMS in your life, you don’t have to let it control what you want to do.

Cleveland Clinic’s healthcare providers will help you manage your POEMS syndrome symptoms with advanced treatments and ongoing support. We’re on your side from the moment you reach out to us — every step of the way.