Living with Amyotrophic neuralgia
A hereditary nerve condition with episodes of severe pain and muscle loss in the shoulders and arms.
Understanding Amyotrophic neuralgia
Episodes of severe pain and muscle loss can occur in one or both shoulders and arms and last from a few hours to a few weeks. Over time, there can be decreased or odd sensations, long-term pain, and trouble moving. Attacks may happen by chance or be triggered by exercise, childbirth, surgery, or infection. People in some families share distinct physical and facial features.
Signs & symptoms
GARD doesn't list a separate symptom list for this condition. The summary says symptoms may include:
- Severe pain in the shoulders and arms
- Muscle loss in the shoulders and arms
- Numbness and tingling
- Long-term pain
- Trouble moving the arms
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Hereditary Neuropathy Foundation Inc. may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: Hereditary Neuropathy Foundation Inc.
- 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 Hereditary Neuropathy Foundation Inc.
- 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
Changes in the SEPT9 gene can cause this condition. It is inherited in an autosomal dominant way, so a changed copy of the gene from one parent can be enough.
Also known as: amyotrophy, hereditary neuralgic; amyotrophy, hereditary neuralgic, with predilection for brachial plexus; brachial plexus neuropathy, hereditary; hereditary brachial plexus neuropathy; hereditary neuralgic amyotrophy; hna
Patient organizations
- Hereditary Neuropathy Foundation Inc.Amyotrophic neuralgia · United States
You are more than your diagnosis
Perspectives from people navigating life with Amyotrophic neuralgia.
Explore research for Amyotrophic neuralgia
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- Recruiting studies from ClinicalTrials.gov
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- 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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