Talk:Myotonic dystrophy

Article Rewrite

I understand that the original information on this page (which was not mine) had violated copyright information and needed to be rewritten December 2006. However whoever rewrote the file removed all the contents I had added on DM2, including differences between DM1 and DM2 and links to the best print and scientific resources available on DM1 & DM2 on the internet. I am a patient advocate rather than a doctor, but have sourced my information carefully. In the absense of a more qualified person being willing to write this information with the detail I have included, I ask that you leave my content online. I invite whoever wishes to modify my contents to contact me at myotonicdystrophy2@yahoo.com if you have any concerns with the content I place there. Thanks. T 21:53, 5 December 2006 (UTC)

I just stumbled across the page, I found the content you posted to be good, I only redid the links to be better suited and to not look so garbled and took out some redunant info that was stated in the article elsewhere also categorized the listing. also separated the article in subcategorys for easy reading, I hope this is to your liking. --Chad 07:48, 7 December 2006 (UTC)

Thanks, I appreciate what you did. I did remove one of the links you provided on a fact sheet. Unfortunately most of these were written before medical awareness of the second form of the disease. These have never been updated to include current medical literature. Their dominance on websites do a great diservice to those with DM2 since DM2 prevalence is now suspected to be similar to that of DM1. I still need to provide further information here to provide a more updated and comprehensive understanding of this disease. T 13:54, 10 December 2006 (UTC)

It's cool, I understand the importance of providing up to date info I myself am disabled and strive to privide the best information and resources possible, I removed the signature on the aricle page, its not nessesary in the article, only on the talk page and spaced out various areas for easier reading. but so far I think the article is coming along nice. --Chad 07:03, 11 December 2006 (UTC)

Thanks for your encouragement. I modified more links and someone else edited after you. They removed info on American support and I tried to address this by accident on the history page. (I'm still technically challenged here.) I just put the deleted info back in and hope it will be left because patient support is critically important and just getting established in the U.S. and Canada.74.108.170.69 04:05, 12 December 2006 (UTC) Oops. I wasn't signed in. Sorry, but that comment and the recent update are from me. T 04:07, 12 December 2006 (UTC)

I don't know how to modify the OMIM article in the upper right. Can you please add the DM2 equivilent: 602668 T 04:09, 12 December 2006 (UTC)

The last editor also removed the two most recent journal articles on DM, but in my experience people have difficulty sourcing these kind of articles themselves. These articles need to be more accessible and should be left in because so many other websites are not updated to reflect the information in these. T 04:22, 12 December 2006 (UTC)

Thanks. Could the OMIM for DM2 be included under external sites? As for DM3 & DMX, many research teams are trying to map the locus for these suspected forms, but their existence is not formally acknowledged in most of the literature. (There is a section in the ENMC 140th report, already listed under reports.) We will have to wait for science to catch up with information that allows doctors to identify with certainty those who appear to have a 3rd or 4th form of myotonic dystrophy before much more is clearly understood about these disorders. There is one further journal article on the subject, but it has been disputed by other researchers at an international conference I attended. T 09:04, 12 December 2006 (UTC)

Duplicate links

The two journal articles I removed becouse they are already on there, they are duplicate links located in DM 1, 2 and 3 Websites and Research Reviews, there is no need for two links to the same address. I did not remove anything to my knowledge the wasn't duplicted, Make sure to read through the actual links in the edit page to see if you already placed them on their in the article, I have removed all duplicated links, the 2 links in external links one was a duplicate and I moved the other to DM2 websites for the gene reveiw, the only other thing I did was shorten the link names and spaced out the Regional Support Group Area, so people visting this article will be able to find what they need right away with no trouble. after reading the links themselves if you know of any more to add feel free, you are right we need to have this the most imformative as possible for the more it will help everyone. --Chad 06:28, 12 December 2006 (UTC)

As for the OMIM I'm not sure how to place in a OMIM for 2-3 different dystrophyies as in DM1 and DM2 or DM3 I think you can only have one in their? not sure if I can figure it out I can let you know --Chad 06:33, 12 December 2006 (UTC)

If you know of any more DM 3 Websites we should add a few more, I looked around and could not find any. I have done everything I can for now and I double checked most of the links myself to make sure they all go to the right place and it seems good, let me know what you think. --Chad 07:00, 12 December 2006 (UTC)

Thanks. Could we add the OMIM link for DM2 under external links? As for DM3, there is only information in two other sources: the 140th ENMC report (already referenced) and another journal article that was disputed by researchers at an international conference I attended. Several research teams are trying to map the locus for 3rd and 4th forms of this disorder. Until they are successful in identifying patients with certainty, little more with be known about the disease pathogenesis. In the interim, few resources acknowledge their existence. T 09:12, 12 December 2006 (UTC)

I guess we could add the OMIM their if its a external link, or we can add it under DM2 Websites since it'll be about DM2 Specifically. let me know what you think. --Chad 09:49, 12 December 2006 (UTC)

Either will be fine. T 15:03, 12 December 2006 (UTC)

It's been taken care of the second OMIM has been added by Wouterstomp. --Chad 05:23, 13 December 2006 (UTC)

Content Quality

By the way, how could this page be upgraded in terms of quality of content? T 15:04, 12 December 2006 (UTC)

Well basically we need to just do the best that we can, read up on everything make sure everything is accurate to the best of our knowledge and keep updating if the need arises, this article has come a long way from the original information on this page that violated copyright. and is more resourceful than previous original information. --Chad 05:39, 13 December 2006 (UTC)

I noticed the section on symptoms of this neurological disorder is only one paragraph. I compiled a list of symptoms from mda.org "Facts About Myotonic Muscular Dystrophy" (2009) and from the MDA Quest Magazine, Fall 2012 "In Focus: Myotonic Muscular Dystrophy" The list is as follows:User Mark (elmo)10:45, 21 October 2013

Weakness of voluntary muscles-those furthest from the center of the body affected first Forearms, hands, lower legs, & feet.

Weakness of grip & difficulty using hand & wrist muscles

Weakness in ankle & wrist muscles cause Foot Drop/Hand drop

Weakness of head, neck, and jaw muscles

Early onset balding (men)

Weakness in eye muscles cause eyelid droop

Weakness of chewing muscles

Weakness of breathing & swallowing muscles

Difficult to relax grip

Heart conduction system-creates conduction block that causes heart to beat at unsafe rate Fainting & dizziness

Weakness in muscles in digestive tract, both upper and lower

Weakness of uterine muscles (women)

Weakness in muscles of blood vessels

Weakness of gall bladder & gall stones

Difficulty delivering a baby; caesarean section problematic due to need for anesthesia (women)

Shrunken testicles (men)

Affects brain to make sufferers appear slow, dull, uncaring, unenthusiastic, or depressed, Avoidant or apathetic personality type

Weakness of facial muscles cause facial expression to be misleading

inability to “settle down to something” apply oneself to work or family life, concentrate or become engrossed in a task (in adults) cognitive disability and learning disorders & sometime mental retardation (in children)

Abnormalities in the part of brain that controls the rhythm of sleeping coupled with regulation of respiration make sleeping problems severe

Hypersomnia (sleep of excessive depth or duration or the condition of sleeping for excessive periods at intervals with intervening periods of normal duration of sleeping and waking)

Excessive, debilitating daytime sleepiness

Early onset cataracts

Weakness of muscles that move, open, and close eyes

Unusual high rate of complications and death associated with general anesthesia

Child born with congenital DM1 can have tented upper lip, club feet. Infants with MMD don’t have myotonia at first but develop it later in life

Speech impediments and hearing impairments

Abdominal pain and frequent constipation and diarrhea

Altered levels of testosterone and insulin

High arch in roof of mouth, long, narrow face (result of facial muscle wasting) & indented temples

If anyone feels this list is inaccurate., please feel free to comment on inaccurate information. — Preceding unsigned comment added by ELMO12091960 (talk • contribs) 03:45, 22 October 2013 (UTC)

DM3

The research mentions type 3, but this is not defined in the text. Can anyone do this? --apers0n 14:17, 28 December 2006 (UTC)

Please refer to the topic of DM3 / DMX above as I previously explained the absence of info on this. In spite of this, strong evidence exists in the one major resource to support the potential existence of multiple forms. This should be included in this page so patients with clinical symptoms and negative DM1 / DM2 molecular tests can find that information. T 10:06, 5 April 2007 (UTC)

Someone mistakenly noted that this was a third type with a molecular test available. At this time, researchers consider the possibility of multiple forms of this disease and are specifically researching forms that may be linked to chromosome 16 and 21. Hopefully we will know more after the IDMC6 in Milan (Sept 07).T 17:52, 9 May 2007 (UTC)

Please note that the only credible info on DM3 as of this date is the report from the 140th ENMC meeting. The Le Ber research was refuted at the IDMC5, and other sites referencing this research are not current.

I don't know how to add the citation for research on DM3/DM4/DMX. The only two sources I have found are the Report on the 140th ENMC and Genetic Instabilities and Neurological Disease, second edition Edited By Robert D. Wells & Tetsuo Ashizawa JUL-2006 ISBN-13: 978-0-12-369462-1 ISBN-10: 0-12-369462-0 ACADEMIC PRESS (References to this research in chapter on DM2: Myotonic Dystrophy Type 2: Clinical and Genetic Aspects by Krahe, Bachinski, and Udd.

The Le Ber article was refuted at the IDMC5 in 2005. I tried to remove it but could not.T 02:09, 17 April 2008 (UTC) —Preceding unsigned comment added by Mmaxx (talk • contribs) "In 2004, a large French family with myotonic dystrophy phenotype combined with late FTD was published a possible DM3 family with suggestive linkage for a locus on Chr 15 [Le Ber]. However, in late 2005 Bjarne Udd was notified by the corresponding author of the paper that the family was not a DM3 candidate because linkage was incorrect and they had identified changes of Paget disease in the family and also identified the mutation in the VCP gene in the family [32]. This message was announced by Udd at the ICDM-5 conference in Quebec 2005." from the report of the 140th ENMC workshop. T 14:36, 23 April 2008 (UTC) —Preceding unsigned comment added by Mmaxx (talk • contribs)

Sub Sections

I took the time to remove subsections with no info in them, should be replaced if and when info can be gathered regarding the specific sections, I removed some bold text that was not nessessary, and shortened a title already explained in Classification, no need to make a lengthy title name, should be kept neat, it makes it too wordy. --Chad 10:12, 2 January 2007 (UTC)

Please refer to this topic above. T 10:03, 5 April 2007 (UTC)

It is disturbing that other resources who contributed here significantly neglected content on DM2. The DM2 group has the largest database of accurate updated information readily available to patients on the web, supported by well respected medical resources. The fact that this group also offers patient support (like the MDSG) and carefully moderated discussion should not be cause to remove a good overall resource for patients to learn from. Please refer this to senior editorial staff and contact me by email for further information before deleting these links again.T 02:06, 17 April 2008 (UTC) —Preceding unsigned comment added by Mmaxx (talk • contribs)

External links

External links to patient support groups (especially online chat boards), blogs, and fundraising groups normally not accepted on Wikipedia. Also, to prevent a proliferation of links, it's good to avoid more than one link to any website. Please read the external links policy and the specific rules for medical articles before adding more external links. WhatamIdoing (talk) 00:41, 13 January 2008 (UTC)

The patient support groups have an active role in the DM world helping to educate patients on a disease that is poorly understood by the majority of doctors in the medical profession and believed to be significantly under-diagnosed. The credible patient advocates work with the support of well respected medical researchers to provide updated resources and information to patients who often have no access to well informed professionals. The resources listed are all non-profit. T 16:59, 19 February 2008 (UTC) —Preceding unsigned comment added by Mmaxx (talk • contribs)

It doesn't make any difference. Wikipedia rules say "no links to online discussion groups." Wikipedia's external links policy and the specific guidelines for medicine-related articles do not permit the inclusion of external links to non-encyclopedic material, particularly including: patient support groups, personal experience/survivor stories, internet chat boards, e-mail discussion groups, recruiters for clinical trials, healthcare providers, fundraisers, or similar pages. Wikipedia also doesn't want to see the same website linked three different times in the external links section.

Wikipedia is an encyclopedia, not an advertising opportunity or a support group for patients or their families. Please do not re-insert links that do not conform to the standard rules. WhatamIdoing (talk) 04:14, 13 April 2008 (UTC)

The MDSG is also a patient support group that received charitable status in the UK. It is well recognized by the DM community as a legitimate source of updated information. The MDSG has medical resources. The International Myotonic Dystrophy Organization is a large website with a potpourri of information on it, but much is outdated. How can you distinguish between these two yet eliminate the DM2 website which maintains updated current information and also has medical resources? T 01:42, 17 April 2008 (UTC) —Preceding unsigned comment added by Mmaxx (talk • contribs)

Under ===Patient education===, I deleted:

• http://www.myotonic.com/ because the website says "Coming soon" and "Please check back with us in a few weeks." When they get some content, the link can be re-evaluated. I see no value in linking to a non-existent website.
• http://www.mdsguk.org/ from the ===patient education=== section because it was already linked three times. Do you see a need for the same page on the same website to be linked three different times in the ==External links== section?
• two Yahoo! groups because the rules specifically and explicitly reject linking to internet chat sites. Actually, the precise wording is "discussion forums/groups (such as Yahoo! Groups)," so there's no possible way to interpret this as meaning anything other than "Don't link to groups.yahoo.com like this one."

Under ===Regional Support Groups supporting patient education===, I deleted:

• http://www.mdsguk.org/ because it is linked elsewhere (see above deletion),
• yet another Yahoo! group (see above deletion), and
• a statement that is not an external link.

There is no possible defense for any of these under the existing policies. If you don't like it, then I suggest that you go to the relevant talk page and try to get the guidelines changed. In the meantime, I have deleted the links again, for the reasons given here. WhatamIdoing (talk) 02:15, 17 April 2008 (UTC)

How to assess strength

MRC power grade is not sensitive enough in detecting clinical progression of MD: doi:10.1136/jnnp.2006.099051 JFW | T@lk 10:44, 28 January 2008 (UTC)

Revert of 585816002

I've reverted 585816002, as it appears to be a copypasted essay with no effort to integrate with the rest of the article, might be a copyvio due to the copypasted definition, and the author (Special:Contributions/Elmo1260 Elmo1260) has only one edit. ⇌Elektron 09:23, 25 December 2013 (UTC)

Clarity

For the non-specialist, the list of symptoms in talk should be included in the Article, particularly if they can be separated in a way that distinguishes DM1 and DM2.

The following sentence appears in the Article... << DM1 symptoms for DM2 include problems with executive function (e.g., organization, concentration, word-finding) and hypersomnia. >> What does it mean "DM1 symptoms for DM2"? Are the problems described symptomatic of DM1, DM2 or both. Davidseed (talk) 11:32, 29 August 2014 (UTC)

@Davidseed ????? marissasato.04@gmail. com Mattress N.sato (talk) 03:18, 14 April 2022 (UTC)

Who is Steinert in "Steinert disease"?

Nobody listed at the Steinert page seems relevant. Equinox ◑ 23:44, 11 July 2017 (UTC)

I have added a history section mentioning Hans Gustav Wilhelm Steinert and added to the Steinert disambiguation page. I believe there is a page on the German Wikipedia about him but my German skills aren't up to the task of translation. PeaBrainC (talk) 16:21, 3 October 2018 (UTC)

Image

Myotonic dystrophy patient

Not sure what was wrong with this? Doc James (talk · contribs · email) 04:13, 10 April 2019 (UTC)