Talk:Charcot–Marie–Tooth disease

AdamSEOWorks (talk) 12:07, 28 October 2015 (UTC)

Spinal Type?

The first table lists CMT4 as being named "spinal type". I think this must be incorrect. CMT4 is the category for autosomal recessive demyelinating CMT. There's nothing to justify the rubric "spinal type".RFabian (talk) 21:39, 13 October 2013 (UTC)

Treatment?

Is there any sort of treatment available for this disease? If so, it should be listed. — Preceding unsigned comment added by 130.91.44.91 (talk) 14:57, 9 May 2006 (UTC)

No, it is degenerative. Supportive management. JFW | T@lk 12:25, 10 May 2006 (UTC)

≈There is complicated surgerys to reverse foot and joint deformities which I would say immensely increases the quality of life as I have personally seen the effects of the latter years of life if left untreated. Finding the Doc for it is the hard part.Mibo123 00:29, 6 December 2006 (UTC)

In terms of supportive management I have found the following recommendations helpful to me (these came from a licensed Naturopathic physician):

Use of l-glutamine powder to reduce muscle wasting, also helpful for intestinal cell enterocytes. I was told this has been used often with AIDS patients.

Use of glutathione. Glutathione is a tripeptide of three amino acids and has been helpful for people with Parkinson's disease and MS. Meherfriend (talk) 01:11, 6 June 2013 (UTC)

WP:TALKNO. Please do not use Talk pages as discussion WP:FORUM or place to publish WP:ORIGINAL RESEARCH. Publishing unsourced experimental therapies on Wikipedia without a critical commentary can also pose serious risk to a gullible follower. kashmiri ^TALK 01:33, 6 June 2013 (UTC)

possible treatments

Currently, the only widely accepted treatment consists of AFO's(ankle/foot orthopedics), that can be large and clunky, and generally require the patient to purchase a pair of shoes that are at least one size larger than their feet, thus exacerbating some of the side-effects of the disorder. Vu1kan (talk)080531.1437 (UTC)

Large doses of ascorbic acid are being investigated to manage it for patients who have CMT 1A. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Abstract&list_uids=15034573 http://www.charcot-marie-tooth.org/archives/cmt_headlines_story.php?id=49 —The preceding unsigned comment was added by 124.168.134.119 (talk) 01:41, 14 May 2007 (UTC).

Some of the latest research were discussed at the lastest CMT-Consortium. http://www.charcot-marie-tooth.org/headlines/117/Latest-Research-Presented-at--CMT-Consortium-Abstracts-Now-Available/ Almost all the mentioned research is available on-line.

charcotmarietooth.webs.com

This is intended as a message to Sam(user's last IP:90.210.56.224). I've read your site. ALL of it. Now while I do empathize with you-I'm personally afflicted with CMT as well-You could at least read Wikipedia's style guidelines on external links, before adding willy-nilly. Pay special attention to section 4(Links normally to be avoided), item 11...here, I'll go ahead and copy it over for you: "11. Links to blogs and personal web pages, except those written by a recognized authority." Addionally, Section 4.1. states:"You should avoid linking to a website that you own, maintain or represent, even if the guidelines otherwise imply that it should be linked."

As a final note: I fail to see how your "Insight into my condition" is a justifiable external, seeing the big type on the index of your blog that says:"FREE FORUM | You will need to register for the forum...", when WP:EL section 4.3 states: "Sites that require registration or a paid subscription should be avoided because they are of limited use to most readers." Granted, you're linking to a forum from an external(and therefore unrelated) site, but I feel that the added hassle isn't worth the time it takes. If you can/are willing to talk about it, maybe you can convince me and the other editors who've reverted your link to not revert. But untill/unless there's a clear and justifiable reason for your blog to be linked, I'm going to continue to revert. Vu1kan (talk) 06:28, 17 December 2008 (UTC)

REPLY FROM SAM 90.210.56.224 (talk) - I have looked everywhere and cannot find how to contact you to discuss this so am forced to reply here. (I too find it an uneccesary waste of time to register here in order to contact you if that is what I would have to do).

charcotmarietooth.webs.com is a resource for those with the condition CMT and yes, I am the author of it. As a relatively new website, I am trying to find as many ways as possible to get the word out to others particularly in the UK as there are no other "personal view" websites like this on the web at all. It is NOT a blog although there is a blog section. and yes there is a link to a forum, but I am not providing the link for the forum on here as I am aware that this is not allowed and I am not trying to promote the forum on Wikipedia.

The information provided on CMT is sourced, verifiable information on CMT, produced with permission and full support and encouragement of the charity CMT UK.

This website has already proved to be a very valuable source of proven info and comfort to others suffering with CMT.

Apologies for persisting in adding the website back on but there are 2 reasons for this . . . 1- I didn't know THIS message was here and 2- I assumed that someone had removed my site as they wanted theirs to take precedent.

Please consider these facts and see that, with exception to going against the guidence of "avoiding" linking to my own website I have not in fact broken any rules. Additionally, if preferred, I could get someone else to submit the link if this would "avoid linking to MY own website??".

Please do consider all these facts and allow me to re-add the rebsite to the external links section.

Kind regards . . . Sam 90.210.56.224 (talk) 22:18, 17 December 2008 (UTC)

replying to the reply

Addressing your first comment: you shouldn't have to register for the 'pedia, i would think your IP would be traceable enough for admin to allow you to continue to use and make edits on a less-than-regular basis.

My reasoning for placing these messages is to start a discussion, try to get some input, and hopefully reach a conclusion. I do agree that there is a large amount of information on your site, information that can provide an insight for those that are 'on the outside looking in', my issue is whether or not your site is of encyclopedic value. I dunno, maybe that shouldn't be a consideration, due to the fact that it is an external link we're discussing.

Maybe you could consider a redesign of the front page to make the informative content more readily accessible(or at least more visible), but I'm not the only person that is editing this page. My solution: a yes/no survey.Vu1kan (talk) 06:00, 18 December 2008 (UTC)

P.S. I also wanted to mention that you're not breaking any rules, per se, just going against some of the guidelines that are supposed to ensure quality content.

REPLY FROM SAM 90.210.56.224 (talk)

Thank you. I have taken your advice already and updated the front page. Good advice. Thank you, all suggestions on making the site more user friendly are welcome.

I look forward to the outcome of the survey, and thank you for your support.

Sam 90.210.56.224 (talk) 19:30, 18 December 2008 (UTC)

Survey

Do you think that the website located at charcotmarietooth.webs.com is an appropriate resource to place in the external links of this article? Yes include/No don't, followed by any comment and signature below the line, please.

---

Yes include, I think that the information on said site is of value to the users of wikipedia, I just wasn't sure as to the motivations of the individual posting the link. Consider me convinced, what does every/anyone else think? Vu1kan (talk) 06:03, 18 December 2008 (UTC)

Voting is Evil. The site is a blog, and it is discouraged per WP:ELNO. I don't think we should vote, we simply shouldn't have that link. --Steven Fruitsmaak (Reply) 20:31, 18 December 2008 (UTC)

It is a valuable resource for a condition that is rarely mentioned and to have it linked to wikipedia would open it up to more people making them aware of the condition of CMT. jackie.

Anythything which helps people with CMT is very useful. I suffer from HNPP which is similar to CMT but is even more rare. Anything which hightens the condition is of great benefit, as more people whould be made aware of it. A link to wikipedia is essential for both those who are suffering, and for others to be more understanding. Sally

By the same guidance as quoted above WP:EL 4.3, links to cmt.org.uk shopuld be omitted as it to requires registration and payment to access parts of the site. charcotmarietooth.webs.com does contain personal opinions but also a lot of information that is otherwise difficult to find to sufferers of a moderately unknown condition. On that basis it performs a useful function and the link should be retained. Nigel Nthep (talk) 20:06, 19 December 2008 (UTC)

A link to http://charcotmarietooth.webs.com/whatiscmt.htm may be ok if it contains more info than the Wikipedia article, though citation of the sources, and some external endorsement of the quality of the information would help to convince me. The home page, http://charcotmarietooth.webs.com/ no thanks - no encyclopedic info, and the first link I clicked was dead. --Hroðulf (or Hrothulf) (Talk) 22:20, 19 December 2008 (UTC)

I have fixed that broken link now, thanks for pointing that out, don't know how that happened. I am happy for the Wikipedia link to be directly to the "What is CMT" page if necessary. Sam 90.210.56.224 (talk) 22:44, 19 December 2008 (UTC)

Without doubt this link must stay active here...... The information & insights available at this destination have been of immense help to me personally. Especially the, What is cmt section & also, My cmt.... My understanding of the issues faced & personal perspective offered here, have far outweighed anything i`ve gained access to thus far... Without this information, i would still be floundering around the many clinically depressing alternatives, dressed up as fountains of wisdom, that left me alienated, cold & isolated........ What has been acheived at this site, deserves recognition,not ignorance..... IT IS IMPERITIVE THAT THIS SITE REMAINS ACCESSIBLE THOUGH THESE PAGES, FOR THE SAKE OF PEOPLE LIKE ME WHO MIGHT JUST OF GIVEN UP, HAD I NOT FOUND THE COMPETENT, INVALUABLE & RESOURCFULL INFO AVAILABLE AT CMT CENTRAL..Toby

Thank you so much for adding the link back. SAM xxx 90.210.56.224 (talk) 13:40, 22 December 2008 (UTC)

STAR program

Maybe it would be beneficial to mention the STAR program in the article? http://www.charcot-marie-tooth.org/STAR.php

Cowchock Wapner Kurtz syndrome incorrect

This article was previously incorrectly refering to CMTX4 when in fact it is Cowchock syndrome that is refering to CMTX4. I have hence redirected Cowchock Wapner Kurtz syndrome to where it should belong. However, I copy/pasted that article here for any info that can be potentially salvaged and placed here on the main article as further info for CMTX4 if wanted/required or for the possibility of forking out from this main article. Cheers!Calaka (talk) 03:58, 13 June 2009 (UTC)

The '''Cowchock Syndrome''' or '''Cowchock Wapner Kurtz syndrome''' is a [[neuropathy]] which was named for the lead scientist of a team who did research on a family which was affected by this disease.<ref>{{cite journal |author=Cowchock FS, Duckett SW, Streletz LJ, Graziani LJ, Jackson LG |title=X-linked motor-sensory neuropathy type-II with deafness and mental retardation: a new disorder |journal=Am. J. Med. Genet. |volume=20 |issue=2 |pages=307–15 |year=1985 |pmid=3856385 |doi=10.1002/ajmg.1320200214 |url=}}</ref> Cowchock Syndrome is a rare, [[X-linked]] [[recessive]] disorder. It is caused by a defect in a particular gene on the X-chromosome. According to the website Online Mendelian Inheritance in Man, it causes "motor sensory neuropathy," which results in muscle weakness. It also frequently causes [[deafness]] and [[mental retardation]]. Also according to OMIM, defects in this same gene are also responsible for [[Charcot-Marie-Tooth disease]].<ref>{{OMIM|310490|Cowchock Syndrome}}</ref> Therefore, these two diseases are very closely related, although they exhibit some differences in the specific symptoms that were recorded. (This similarity between the diseases has created some confusion for student researchers at DCHS who were investigating X-linked diseases, so other students should beware that there is not much information about Cowchock disease in particular - it is better to look for information about Charcot-Marie-Tooth disease). ==References== {{reflist}} {{PNS diseases of the nervous system}} [[Category:Neurological disorders]] [[Category:Genetic disorders]] [[Category:syndromes]]

==

I read recently in a health magazine that peripheral neuropathies such a CMT often involve a loss of dopamine in the brain. Can anyone provide more information on this? — Preceding unsigned comment added by 24.113.30.234 (talk) 03:35, 26 January 2012 (UTC)

Morbus??

Where is the source for CMT having ever been known as MORBUS Charcot Marie Tooth please?

It's not something I or others with CMT have heard of? — Preceding unsigned comment added by 90.203.83.18 (talk) 12:45, 13 June 2012 (UTC)

Deleted. Morbus means simply "disease" in Latin.

Also, it might be a good idea to make separate descriptions of "CMT proper", i.e., CMT types 1 and 2, and other, more rare forms of the disease. Currently, except only in the "Classification" section, even though appearing to talk about all forms of CMT, this article actually discusses specificities of the two "classical" types of CMT - those that traditionally were known as CMT. So, I wonder whether moving the entire Classification section for example to hereditary motor and sensory neuropathy and leaving the rest of the article here more focused on CMT1 and CMT2 would not have clear advantages. What would be your views? kashmiri 17:36, 13 June 2012 (UTC)

nerve conduction velocity in HMSN type 3?

the table in the classification section says that nerve conduction velocity is not impaired in CMT3:

CMT3 Dejerine-Sottas disease Very rare Does not impair nerve conduction velocity.

i'm not sure whether that is correct and where the information comes from.
wikipedia's own article about CMT3 claims that nerve conduction IS slowed down.
can anyone check and correct if necessary?

CMT the elusive MD

In the link provide as a source did not Mention that CMT was previously considered a sub type of Muscular dystrophy. 198.45.184.25 (talk) 19:54, 26 June 2013 (UTC)

Another reference

This reference might be worth adding: http://onlinelibrary.wiley.com/doi/10.1111/ahg.12017/abstract

A Novel Mutation in FGD4/FRABIN Causes Charcot Marie Tooth Disease Type 4H in Patients from a Consanguineous Tunisian Family

Annals of Human Genetics

Volume 77, Issue 4, pages 336–343, July 2013 Eastmain (talk • contribs) 23:33, 5 July 2013 (UTC)

Ascorbic Acid

I wonder if that mention of the trials and their failure should be included in the article. Not all of CMT related medical trials have been included. Not sure why a failed one is so important especially under the header of management.Serialjoepsycho (talk) 22:09, 5 October 2014 (UTC)

Meh... A lot of people had their hopes up, so a lot are interested. I remember meeting with the head of neurology at U Penn a few years ago (yes, I have CMT, type X) and asking him about it, and he said "they're barking up the wrong tree." Maybe some day.  :( Djcheburashka (talk) 08:07, 11 November 2014 (UTC)

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Trivia

This section is just poorly referenced trivia so moved here per WP:MEDMOS Doc James (talk · contribs · email) 18:46, 23 October 2017 (UTC)

"

Media

There is a documentary titled Bernadette that follows a young woman battling the disease. It was made in 2012 and is currently sold online.

A 2011 episode of Mystery Diagnosis featured a young girl who was eventually diagnosed with Charcot–Marie–Tooth disease.

Notable cases

• Victor Bailey (musician)
• William Lane Craig (Christian philosopher and apologist)
• Julie Newmar (was Catwoman in the 60's “Batman” TV series.) — Preceding unsigned comment added by 84.215.128.149 (talk) 22:19, 26 May 2018 (UTC)

"

References

Reliable sources

I think book chapters would be very good as secondary sources Amousey (talk) 09:58, 30 May 2020 (UTC)

Possible source: journal article

Nonnekes, Jorik; Hofstad, Cheriel; de Greef-Rotteveel, Annemieke; van der Wielen, Heleen; van Gelder, Janke H.; Plaats, Christian; Altmann, Viola; Krause, Fabian; Keijsers, Noël; Geurts, Alexander & Louwerens, Jan Willem K. (May 21, 2021). "Management of gait impairments in people with Charcot-Marie-Tooth disease: A treatment algorithm". Journal of rehabilitation medicine [J Rehabil Med]. 53 (5). Medical Journals Sweden AB: jrm00194. doi:10.2340/16501977-2831. ISSN 1651-2081. PMID 33880570. Retrieved March 30, 2022 – via MEDLINE Complete PubMed.

I was reading this today, and thought it might be useful to summarize in this article. —Scottyoak2 (talk) 04:24, 31 March 2022 (UTC)

Typography

We seem to have used emdashes in the name of this page and inline references to the condition.

That's not standard American typographical usage; those should be hyphens, which are used to construct multi-word predicates, not emdashes, which are solely creatures of typesetting.

[ I note, as evidence for this argument, that nearly all of the outlink references use a hyphen. ]

Is there some reason why that was done, does anybody know?
-- Baylink (talk) 15:54, 8 September 2023 (UTC)