Polyneuropathy associated with IgM monoclonal gammopathy with anti-MAG

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Overview

Polyneuropathy associated with IgM monoclonal gammopathy with anti-MAG (myelin-associated glycoprotein) antibodies is a rare neurological condition that affects the peripheral nerves — the nerves outside the brain and spinal cord. In this disease, the body produces an abnormal protein called IgM monoclonal immunoglobulin, which is made by a small clone of immune cells. This IgM protein specifically targets MAG, a component of the protective coating (myelin sheath) that surrounds nerves. When these anti-MAG antibodies attack the myelin, the nerves gradually lose their ability to send signals properly, especially in the hands and feet. The condition typically begins slowly in older adults, usually after age 50. The most common early symptoms include numbness, tingling, and loss of balance, starting in the feet and gradually moving upward. Patients often notice difficulty with fine motor tasks like buttoning shirts, and they may develop an unsteady gait or tremor in the hands. The disease tends to progress slowly over years, but it can significantly affect quality of life. Treatment remains challenging. The underlying IgM-producing clone is usually a low-grade lymphoproliferative disorder, most often called Waldenström macroglobulinemia or IgM monoclonal gammopathy of undetermined significance (MGUS). Treatment options include rituximab (a medication that targets the immune cells producing the harmful antibody), plasma exchange, and other immunosuppressive therapies. However, responses are often partial, and no single treatment has been proven to reliably halt or reverse the nerve damage. Research is ongoing to find more effective therapies.

Also known as:

Key symptoms:

Numbness and tingling in the feet and handsLoss of balance and unsteady walkingDifficulty feeling vibrations or light touchTremor in the handsDifficulty with fine motor tasks like writing or buttoning clothesWeakness in the lower legs and feetCramping or aching in the legsCold or painful sensations in the extremitiesFoot drop in advanced casesGradual loss of reflexesFatigueDifficulty walking on uneven surfaces

Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Late onset

Begins later in life, typically after age 50

Orphanet ↗NORD ↗

FDA & Trial Timeline

1 event
Jun 2023Rituximab Therapy in Anti-Myelin Associated Glycoprotein Patients With Characteristics of Good Responders

Centre Hospitalier Universitaire de Saint Etienne — PHASE3

TrialRECRUITING

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

No FDA-approved treatments are currently listed for Polyneuropathy associated with IgM monoclonal gammopathy with anti-MAG.

1 clinical trialare actively recruiting — trials can provide access to cutting-edge therapies.

View clinical trials →

Clinical Trials

1 recruitingView all trials with filters →
Phase 31 trial
Rituximab Therapy in Anti-Myelin Associated Glycoprotein Patients With Characteristics of Good Responders
Phase 3
Actively Recruiting
PI: Anne-Laure KAMINSKY, MD (CHU de Saint-Etienne) · Sites: Brest; Grenoble +13 more · Age: 1899 yrs

Specialists

3 foundView all specialists →
NK
Nathalie KUBIS
Specialist
PI on 2 active trials
AK
Anne-Laure KAMINSKY
Specialist
PI on 1 active trial

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Polyneuropathy associated with IgM monoclonal gammopathy with anti-MAG.

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Community

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Latest news about Polyneuropathy associated with IgM monoclonal gammopathy with anti-MAG

Disease timeline:

New recruiting trial: Rituximab Therapy in Anti-Myelin Associated Glycoprotein Patients With Characteristics of Good Responders

A new clinical trial is recruiting patients for Polyneuropathy associated with IgM monoclonal gammopathy with anti-MAG

Caregiver Resources

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Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Questions for your doctor

Bring these to your next appointment

  • Q1.How high are my anti-MAG antibody levels, and what does that mean for my prognosis?,Is my underlying IgM-producing blood disorder something that needs treatment on its own?,Would rituximab be appropriate for me, and what are the expected benefits and risks?,How often should I have blood tests and nerve conduction studies to monitor my condition?,What physical therapy or rehabilitation programs would help me maintain my function?,Are there any clinical trials I might be eligible for?,What signs of worsening should prompt me to contact you urgently?

Common questions about Polyneuropathy associated with IgM monoclonal gammopathy with anti-MAG

What is Polyneuropathy associated with IgM monoclonal gammopathy with anti-MAG?

Polyneuropathy associated with IgM monoclonal gammopathy with anti-MAG (myelin-associated glycoprotein) antibodies is a rare neurological condition that affects the peripheral nerves — the nerves outside the brain and spinal cord. In this disease, the body produces an abnormal protein called IgM monoclonal immunoglobulin, which is made by a small clone of immune cells. This IgM protein specifically targets MAG, a component of the protective coating (myelin sheath) that surrounds nerves. When these anti-MAG antibodies attack the myelin, the nerves gradually lose their ability to send signals pr

How is Polyneuropathy associated with IgM monoclonal gammopathy with anti-MAG inherited?

Polyneuropathy associated with IgM monoclonal gammopathy with anti-MAG follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Polyneuropathy associated with IgM monoclonal gammopathy with anti-MAG typically begin?

Typical onset of Polyneuropathy associated with IgM monoclonal gammopathy with anti-MAG is late onset. Age of onset can vary across affected individuals.

Are there clinical trials for Polyneuropathy associated with IgM monoclonal gammopathy with anti-MAG?

Yes — 1 recruiting clinical trial is currently listed for Polyneuropathy associated with IgM monoclonal gammopathy with anti-MAG on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat Polyneuropathy associated with IgM monoclonal gammopathy with anti-MAG?

3 specialists and care centers treating Polyneuropathy associated with IgM monoclonal gammopathy with anti-MAG are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.