This page contains Guidance documents. For Information Leaflets please see the Patient and Families Section.
| Guidelines | Date of review |
|---|---|
| Anaesthetic guidance | March 2026 |
| Anaesthetic guidance summary | March 2026 |
| Management of Myotonic Dystrophy in adults | May 2024 |
| Prescribing Modafinil in patients with Myotonic Dystrophy type 1 | December 2024 |
Modafinil
Modafinil is not licensed for use in Myotonic Dystrophy. The value and role of Modafinil remains the subject of debate. The network would advise that it is only prescribed by professionals experienced in its use and with experience in the management of patients with Myotonic Dystrophy.
This is a draft letter for the patients GP on the prescription of Modafinil which can be found here
Myotonic Dystrophy Alert Key rings
The Scottish Muscle Network has produced alert key rings as seen below. If you are a professional running clinics and would like a supply of these key rings please contact nss.smn@nhs.scot If you or your relative has Myotonic Dystrophy and would like a key ring, please ask your doctor.
Research
The Scottish Muscle Network has close links with the Myotonic Dystrophy research group led by Professor Darren Monckton
| Scottish DM1 database – What can it tell us? | Dr Mark Hamilton |
Additional information about research is available through the support organisations detailed on the Links page.