Recognizing LONDs
A Healthcare Provider Guide
Recognize the signs of late-onset neuromuscular diseases (LONDs), using the LONDC Clinical Decision Tool, to improve patient care and outcomes.
People with rare conditions can wait more than six (6) years before getting a correct diagnosis, on average.1 For example, one study found the time to diagnosis for those with myasthenia gravis (MG) was six (6) years for nearly 20% of patients.2
People with rare diseases go through 17 clinical encounters before getting a correct diagnosis, on average.1
The diagnostic odyssey for a person with a rare disease can cost more than $200,000 in avoidable medical bills and lost income.1
How to Recognize LONDs
Help patients get diagnosed faster and receive earlier and more complete referrals to neuromuscular specialists. While rare individually, together LONDs are common enough that many healthcare providers will encounter a patient with one of these conditions.
A list of the 20+ LONDs can be found at this page. While referring to a neuromuscular specialist is recommended, alternative actions are suggested if there is limited or no access to these specialists or in case of emergency.
L
Look for
Look for focal or generalized muscle weakness, dysfunction, or muscle atrophy in limbs
O
On top of
On top of one or more symptoms or findings that are listed in the clinical tool
N
D
Now support Diagnosis
Now support diagnosis by referring patient to a neuromuscular specialist, or if not available in your area, a neurologist or physical medicine and rehabilitation (PM&R) physician.
Signs to Watch For
Patients with potential LONDs may ask why they’ve been feeling progressively weaker, experiencing exhaustion more than usual, or dropping things or tripping more often.
They may describe concerns with:
Climbing stairs without tripping
Standing from seated position
Walking moderate distances comfortably
Holding items without dropping them
Doing small tasks
(e.g., opening a jar or typing on a keyboard)
Lifting arms overhead
(e.g., combing / drying hair or reaching to a high shelf)
Using the
LOND Clinical Decision Tool
If you are a clinician who thinks this tool might be helpful for your practice, access the tool here.
This tool is primarily intended for first-line healthcare professionals, including primary care providers (PCPs) and advanced practice providers (APPs), to encourage greater recognition of the signs and symptoms of LONDs and to facilitate earlier specialist referrals for further diagnostic evaluation. The tool may also be of interest to and used by community-based neurologists (CBNs) and their practices.
- The tool is designed to be highly sensitive to ensure individuals with a wide range of LONDs are detected and referred to specialists. However, the tool is not highly specific and is not intended as a diagnostic tool to discern specific LONDs. and therefore, does not provide guidance on testing for specific conditions. Further assessment and differential diagnosis are at the provider’s discretion.
- Throughout, examples of how patients describe their experiences are provided to help clinicians recognize the various ways weakness may present or go unrecognized. Research has revealed that patients may describe their symptoms in terms of impact on their daily activities, while healthcare professionals might be more attuned to listening for medical terms or descriptions of clinical impact.
- This tool does not serve as a clinical guideline and does not replace clinical judgment. Potential serious, acute, or imminently life-threatening causes of all symptoms should be evaluated and elevated as emergencies as indicated.
Resources
The American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM) has several resources to support clinicians in identifying neuromuscular conditions and providing care.
If you suspect your patient has a neuromuscular disorder, here are resources to help you find appropriate care for the patient:
If you need to conduct a neuromuscular examination for a patient, here is a series of videos, a one-pager checklist, and other resources to guide you through the process:
- Here’s a concise checklist of essential components to include in your neuromuscular examination
- You can refer to the LOND Clinical Decision Tool while conducting neuromuscular exams
- See the Types of LONDs page for information about these different conditions and the patient advocacy organizations that serve each community.
Similar tools used for identifying or diagnosing specific neuromuscular conditions include:
Help Refine the LOND Clinical Tool
Please fill out this form to participate in a pilot, evaluate the tool’s implementation and effectiveness, or share feedback on your experience using the tool.
How ANF Developed the LOND Clinical Decision Tool
Defining the Challenge
120 U.S.-based clinicians participated in an online survey to understand what makes early recognition of LONDs difficult. The survey found provider recognition of LONDs is low and that referrals to neuromuscular specialists are rare.
NORD 2025 Breakthrough Summit Poster detailing the survey findings
Developing the Tool
A group of neuromuscular specialists developed a symptom catalogue based on clinical experience and understanding of literature.
ANF developed the draft clinical tool based on these findings and refined with clinical and community participation.
Reaching Consensus
ANF used a modified Delphi consensus process involving 32 clinicians in neuromuscular medicine, physical medicine, and neurology.
The participants reviewed the tool and provided feedback about the appropriateness of the tool and whether it met the intended objectives.
References
- EveryLife Foundation for Rare Diseases. The Cost of Delayed Diagnosis in Rare Disease: A Health Economic Study. September 13, 2023. everylifefoundation.org/wp-content/uploads/2023/09/EveryLife-Cost-of-Delayed-Diagnosis-in-Rare-Disease_Final-Full-Study-Report_0914223.pdf
- Sobierajski T, et al. Diagnosis and Therapy of Myasthenia Gravis—The Patients’ Perspective: A Cross-sectional Study. Front Neurol. Published 2023 Aug 4. pmc.ncbi.nlm.nih.gov/articles/PMC10437051
