Evaluation
Note: The content on this page and throughout this website should not be used as a substitute for medical care. For medical care or advice related to breathing muscle weakness, please seek the care of a clinician who specializes in the breathing issues of those with Neuromuscular Disease (NMD).
We are providing a high-level overview of what individuals living with a Neuromuscular Disease (NMD) in the United States (US) should expect when seeking evaluation of their condition’s respiratory involvement. One of the challenges in providing this information is that no one standard of care for respiratory muscle weakness exists for all forms of NMD. Some standards of care do exist for some forms of NMD, however, and these can often be found on the website of a nonprofit that funds research for that specific NMD. They are often part of a published natural history study. We encourage you to seek out that information to ensure you have the most complete set of recommendations for your specific form and/or subtype of NMD.
As soon as you receive an NMD diagnosis or an NMD is strongly suspected, even if the type and/or subtype of NMD is unknown, an evaluation should be done by a Neuromuscular breathing specialist. At your first appointment, your baseline pulmonary function can be determined, and each subsequent appointment will measure and compare changes to proactively ensure that any breathing muscle aids (i.e., mechanical ventilation, breath stacking, and/or secretion clearance/mechanical cough assistance devices) are ordered as soon as they are needed.
Why a Neuromuscular breathing specialist?
Many who live with NMD will tell you that seeing a clinician who does not understand Neuromuscular breathing weakness can result in inappropriate interventions being prescribed like CPAP and/or supplemental oxygen without bi-level ventilation assistance, delays in interventions being prescribed, and/or no interventions being prescribed until a respiratory crisis occurs. Neuromuscular breathing weakness is rarely seen or recognized and may be poorly understood by clinicians who specialize in lung diseases like asthma and COPD which are treated differently from the restricted pattern of breathing seen in NMD.
What happens during the evaluation?
The clinical evaluation for patients with known and suspected respiratory involvement in NMD focuses on the function of the respiratory system: ventilatory, cough, and sometimes swallowing for those conditions that are known to impact swallowing.
To learn more, please select a link to a specific evaluation subpage below.
Pulmonary Function/Spirometry
Blood Gases
Sleep Study
Swallowing
Note: The content on this page and throughout this website should not be used as a substitute for medical care. For medical care or advice related to breathing muscle weakness, please seek the care of a clinician who specializes in the breathing issues of those with Neuromuscular Disease (NMD).
We are providing a high-level overview of what individuals living with a Neuromuscular Disease (NMD) in the United States (US) should expect when seeking evaluation of their condition’s respiratory involvement. One of the challenges in providing this information is that no one standard of care for respiratory muscle weakness exists for all forms of NMD. Some standards of care do exist for some forms of NMD, however, and these can often be found on the website of a nonprofit that funds research for that specific NMD. They are often part of a published natural history study. We encourage you to seek out that information to ensure you have the most complete set of recommendations for your specific form and/or subtype of NMD.
As soon as you receive an NMD diagnosis or an NMD is strongly suspected, even if the type and/or subtype of NMD is unknown, an evaluation should be done by a Neuromuscular breathing specialist. At your first appointment, your baseline pulmonary function can be determined, and each subsequent appointment will measure and compare changes to proactively ensure that any breathing muscle aids (i.e., mechanical ventilation, breath stacking, and/or secretion clearance/mechanical cough assistance devices) are ordered as soon as they are needed.
Why a Neuromuscular breathing specialist?
Many who live with NMD will tell you that seeing a clinician who does not understand Neuromuscular breathing weakness can result in inappropriate interventions being prescribed like CPAP and/or supplemental oxygen without bi-level ventilation assistance, delays in interventions being prescribed, and/or no interventions being prescribed until a respiratory crisis occurs. Neuromuscular breathing weakness is rarely seen or recognized and may be poorly understood by clinicians who specialize in lung diseases like asthma and COPD which are treated differently from the restricted pattern of breathing seen in NMD.
What happens during the evaluation?
The clinical evaluation for patients with known and suspected respiratory involvement in NMD focuses on the function of the respiratory system: ventilatory, cough, and sometimes swallowing for those conditions that are known to impact swallowing.
To learn more, please select a link to a specific evaluation subpage below.
Pulmonary Function/Spirometry
Blood Gases
Sleep Study
Swallowing