Living with Neuralgic amyotrophy
A condition with sudden shoulder and upper arm pain followed by weakness and muscle wasting; there is also an inherited form.
Understanding Neuralgic amyotrophy
The pain follows the path of one or more nerves and often has no obvious physical cause. It involves the brachial plexus, the network of nerves that controls movement and feeling in the shoulders and arms. PTS is one of two forms. The other is hereditary. GARD lists onset in adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Upper arm and shoulder pain
- Arm weakness
- Muscle wasting in the arm
- Winged shoulder blade
- Pins and needles feeling
- Joint pain
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 brain and nervous system specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Autoimmune Association and The Foundation for Peripheral Neuropathy may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists)
- Expert care
- Expert lists: Autoimmune Association, The Foundation for Peripheral Neuropathy
- 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 Autoimmune Association and other patient organizations
- 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
For PTS the cause is still unknown. Suspected triggers include infections, surgery, vaccinations, injury, childbirth, strenuous exercise, and certain medical procedures. The hereditary form is caused by changes in the SEPT9 gene in about 85% of cases.
Also known as: acute brachial plexus neuritis; immune brachial plexus neuropathy; mononeuritis multiplex with brachial predilection; neuralgic shoulder amyotrophy; parsonage turner syndrome
Patient organizations
- Autoimmune AssociationNeuralgic amyotrophy · United States
- The Foundation for Peripheral NeuropathyPeripheral neuropathy · United States
- Neuropathy Action FoundationPeripheral neuropathy · United States
You are more than your diagnosis
Perspectives from people navigating life with Neuralgic amyotrophy.
Explore research for Neuralgic amyotrophy
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