Living with IgG4-related pachymeningitis
A rare condition with swelling and thickening of the outer covering of the brain or spinal cord.
Understanding IgG4-related pachymeningitis
It can be widespread or form tumor-like lesions. It most often appears in adults and older adults. It often presents with headache and cranial nerve problems. Surgery may be recommended in advanced or severe cases.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Headache
- Pain
- Weakness in the leg muscles
- Cranial nerve problems
- Changes in the dura seen on scans
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include autoimmune and inflammatory disease specialists and brain and nervous system specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- autoimmune and inflammatory disease specialists (rheumatologists); Brain and nervous system specialists (neurologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with rare disease patient organizations for support
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD doesn't describe a cause for this condition yet.
Also known as: idiopathic hypertrophic pachymeningitis; immunoglobulin g4 related pachymeningitis
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with IgG4-related pachymeningitis.
Explore research for IgG4-related pachymeningitis
Explore actively recruiting IgG4-related pachymeningitis studies with HealthSpark.
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- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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