Your care team
There are several healthcare professionals who might be involved in confirming a diagnosis of NDM and who will help you manage your symptoms.
Role in your care
Primary care physician/GP
A primary care physician is often the first doctor you will see when you recognize that you or your child is experiencing symptoms of NDM. Primary care physicians focus on your all-round ongoing healthcare and may be able to help with referring you to other services eg a neurologist or physiotherapy.1
General neurologist or neurologist specialising in rare neuromuscular diseases
A neurologist is a doctor with specialist training in diseases that affect the nervous system.1 As NDM is a rare disease, it is likely that you will need to see a neurologist with additional training in rare neuromuscular diseases to confirm a diagnosis of NDM, and you may need to return for follow-up appointments if ongoing treatment is needed.
Many specialist centres that treat people with NDM will have nurses who have additional training in rare diseases that affect the nervous system and muscles. Your specialist nurse will be able to help you understand your NDM diagnosis better and give more advice on how to manage your NDM-related symptoms.
Pharmacists are experts in medicines. They will source and provide prescribed medication for patients and can help advise doctors on the suitability of different drugs. Pharmacists can also offer patients advice on taking their medication.
- NHS. Available at https://www.healthcareers.nhs.uk/explore-roles#3414 Accessed March 2021.
- Matthews E, et al. Brain 2010:133; 9–22
- NIH. Available at
https://www.ninds.nih.gov/Disorders/All-Disorders/Myotonia-Congenita-Information-Page Accessed March 2021
- Heatwole CR and Moxley RT. Neurotherapeutics. 2007;4(2):238-51