{"id":18,"date":"2017-01-13T14:03:01","date_gmt":"2017-01-13T14:03:01","guid":{"rendered":"http:\/\/www.mcns.scot.nhs.uk\/smn\/?page_id=18"},"modified":"2025-10-17T07:56:30","modified_gmt":"2025-10-17T07:56:30","slug":"myotonic-dystrophy","status":"publish","type":"page","link":"https:\/\/www.nn.nhs.scot\/smn\/professionals\/guidelines\/myotonic-dystrophy\/","title":{"rendered":"Myotonic Dystrophy Guidelines"},"content":{"rendered":"\n<p>This page contains Guidance documents. For Information Leaflets please <a href=\"https:\/\/www.smn.scot.nhs.uk\/patients-and-families\/patient-information-leaflets\/\">see the Patient and Families Section.<\/a><\/p>\n\n\n\n<table id=\"tablepress-3\" class=\"tablepress tablepress-id-3\">\n<thead>\n<tr class=\"row-1\">\n\t<th class=\"column-1\">Guidelines<\/th><th class=\"column-2\">Date of review<\/th>\n<\/tr>\n<\/thead>\n<tbody class=\"row-striping row-hover\">\n<tr class=\"row-2\">\n\t<td class=\"column-1\"><a href=\"https:\/\/www.nn.nhs.scot\/smn\/wp-content\/uploads\/sites\/25\/2023\/07\/NSD610-018.14-SMN-Anaesthetic-guidance-for-patients-with-Myotonic-Dystrophy.pdf\" rel=\"noopener\" target=\"_blank\">Anaesthetic guidance<\/a><\/td><td class=\"column-2\">March 2026<\/td>\n<\/tr>\n<tr class=\"row-3\">\n\t<td class=\"column-1\"><a href=\"https:\/\/www.nn.nhs.scot\/smn\/wp-content\/uploads\/sites\/25\/2024\/04\/NSD610-018.15-SMN-Summary-peri-operative-management-of-people-with-Myotonic-Dystrophy.pdf\" rel=\"noopener\" target=\"_blank\">Anaesthetic guidance summary<\/a><\/td><td class=\"column-2\">March 2026<\/td>\n<\/tr>\n<tr class=\"row-4\">\n\t<td class=\"column-1\"><a href=\"https:\/\/www.nn.nhs.scot\/smn\/wp-content\/uploads\/sites\/25\/2025\/08\/NSD610-018.11-SMN-Mgt-of-Myotonic-Dystrophy-DM1-in-adults-V3.docx\" rel=\"noopener\" target=\"_blank\">Scottish Guideline for the Management of Myotonic Dystrophy type 1 (DM1) in Adults<\/a><\/td><td class=\"column-2\">August 2027<\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n<!-- #tablepress-3 from cache -->\n\n\n<p><strong>Modafinil<br><\/strong>Modafinil is not licensed for use in Myotonic Dystrophy.&nbsp; The value and role of Modafinil remains the subject of debate.&nbsp; 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.<br><\/p>\n\n\n\n<p><strong>Myotonic Dystrophy Alert key rings<\/strong><\/p>\n\n\n\n<p>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 <a href=\"mailto:nss.smn@nhs.scot\">nss.smn@nhs.scot<\/a>\u00a0If you or your relative has Myotonic Dystrophy and would like a key ring, please ask your doctor.<\/p>\n\n\n\n<figure class=\"wp-block-image\"><img loading=\"lazy\" decoding=\"async\" width=\"225\" height=\"300\" src=\"https:\/\/www.smn.scot.nhs.uk\/wp-content\/uploads\/sites\/25\/2017\/01\/keyring-FE-225x300.jpg\" alt=\"\" class=\"wp-image-180\" srcset=\"https:\/\/www.nn.nhs.scot\/smn\/wp-content\/uploads\/sites\/25\/2017\/01\/keyring-FE-225x300.jpg 225w, https:\/\/www.nn.nhs.scot\/smn\/wp-content\/uploads\/sites\/25\/2017\/01\/keyring-FE.jpg 480w\" sizes=\"auto, (max-width: 225px) 100vw, 225px\" \/><\/figure>\n\n\n\n<figure class=\"wp-block-image\"><img loading=\"lazy\" decoding=\"async\" width=\"225\" height=\"300\" src=\"https:\/\/www.smn.scot.nhs.uk\/wp-content\/uploads\/sites\/25\/2017\/01\/keyring-BE-225x300.jpg\" alt=\"\" class=\"wp-image-179\" srcset=\"https:\/\/www.nn.nhs.scot\/smn\/wp-content\/uploads\/sites\/25\/2017\/01\/keyring-BE-225x300.jpg 225w, https:\/\/www.nn.nhs.scot\/smn\/wp-content\/uploads\/sites\/25\/2017\/01\/keyring-BE.jpg 480w\" sizes=\"auto, (max-width: 225px) 100vw, 225px\" \/><\/figure>\n\n\n\n<p><strong>Research<\/strong><\/p>\n\n\n\n<p>The Scottish Muscle Network has close links with the Myotonic Dystrophy research group led by <a href=\"http:\/\/www.gla.ac.uk\/research\/az\/boydorr\/people\/byname\/darrenmonckton\/\">Professor Darren Monckton<\/a><\/p>\n\n\n\n<figure class=\"wp-block-table\"><table><tbody><tr><td><a href=\"https:\/\/www.smn.scot.nhs.uk\/wp-content\/uploads\/sites\/25\/2017\/01\/Poster-Scottish-DM1-database.pdf\">Scottish DM1 database &#8211; What can it tell us?<\/a><\/td><td>Dr Mark Hamilton<\/td><\/tr><\/tbody><\/table><\/figure>\n\n\n\n<p>Additional information about research is available through the support organisations detailed on the Links page.<\/p>\n","protected":false},"excerpt":{"rendered":"<p class=\"nhsuk-card__description\">This page contains Guidance documents. For Information Leaflets please see the Patient and Families Section. ModafinilModafinil is not licensed for [&hellip;]<\/p>\n","protected":false},"author":4,"featured_media":0,"parent":4038,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-18","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/www.nn.nhs.scot\/smn\/wp-json\/wp\/v2\/pages\/18","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.nn.nhs.scot\/smn\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.nn.nhs.scot\/smn\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.nn.nhs.scot\/smn\/wp-json\/wp\/v2\/users\/4"}],"replies":[{"embeddable":true,"href":"https:\/\/www.nn.nhs.scot\/smn\/wp-json\/wp\/v2\/comments?post=18"}],"version-history":[{"count":117,"href":"https:\/\/www.nn.nhs.scot\/smn\/wp-json\/wp\/v2\/pages\/18\/revisions"}],"predecessor-version":[{"id":4796,"href":"https:\/\/www.nn.nhs.scot\/smn\/wp-json\/wp\/v2\/pages\/18\/revisions\/4796"}],"up":[{"embeddable":true,"href":"https:\/\/www.nn.nhs.scot\/smn\/wp-json\/wp\/v2\/pages\/4038"}],"wp:attachment":[{"href":"https:\/\/www.nn.nhs.scot\/smn\/wp-json\/wp\/v2\/media?parent=18"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}