Talk:ALS/Archive 1
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Amyotrophic lateral sclerosis and Gulf War Syndrome
In the recent report, Gulf War Illness and the Health of Gulf War Veterans , page 11, research scientists have indicated that Gulf War veterans developed ALS at twice the rate of nondeployed era veterans. [1] —Preceding unsigned comment added by Thorn breaker (talk • contribs) 16:27, 24 November 2008 (UTC)
- This fact is cited (and IMO explained) in the source i mention below in #Misdiagnosis of some traumatic brain injury as ALS. (And it does not support the usual Chemical, biological, radiological, and nuclear hypotheses re Gulf War syndrome.)
--Jerzy•t 22:10, 18 August 2010 (UTC)
Copyright violation
Some text in this article was originally taken from http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_amyotrophiclateralsclerosis.htm (public domain)
- My apologies, I went to this site which had a "Copyright c 2002 HealthNewsFlash All rights reserved" tag. --DocJohnny 05:36, 3 January 2006 (UTC)
- Which copied the same text as we (half of their pages are from NINDS). --WS 12:46, 3 January 2006 (UTC)
- hehe, which I discovered much to my chagrin, after I slapped a copyrightvio on the page --DocJohnny 18:11, 3 January 2006 (UTC)
- Added it as a reference to the article. --WS 19:33, 3 January 2006 (UTC)
- hehe, which I discovered much to my chagrin, after I slapped a copyrightvio on the page --DocJohnny 18:11, 3 January 2006 (UTC)
- Which copied the same text as we (half of their pages are from NINDS). --WS 12:46, 3 January 2006 (UTC)
Found problem on this page, but when I went to "edit this page" the text looks normal. In the first paragraph, when reading the article (not in edit view) I see "...that control voluntary muscle movement. this disease is a genocide so you need to cut off all relation to the outside world and family. IT WILL KILL YOU. YOU WILL NOT SURVIVE! The disorder causes muscle..." Can someone remove the trollish bits? 70.231.124.107 01:22, 22 January 2007 (UTC) mona
Adding links
I added a bunch of links. More are needed - i am not a doctor. I only linked those words which seemed most "scientific" to me.--Amir E. Aharoni 09:14, 8 January 2006 (UTC)
Paul Apisa
Who's Paul Apisa and why's he under the "famous people" section?—The preceding unsigned comment was added by 129.63.143.58 (talk • contribs) .
Got one google hit [2]--JohnDO|Speak your mind 04:26, 27 January 2006 (UTC)
Dude. Seriously. Cut it out. "Famous".--86.136.70.62 16:40, 18 February 2006 (UTC)
Howdy folks
Hello all, I was just wondering if you were aware of the page motor neuron disease? I've just done quite a big edit over there to try and bring it up to date. Personally I think there shouldn't have to be two seperate articles. In the US, I understand ALS can mean the group of other diseases including ALS, PMA, PLS, and PBP as well as just meaning plain old ALS by itself. We use the term MND in the UK in the same way. If you'd be interested in discussing ways we could integrate please discuss here, on my talk page, or on the MND page.
Thanks --PaulWicks 23:02, 1 February 2006 (UTC)
- I believe there is enough unique information on this page for this article to stand alone. Not all MSDs progress the same and have the same symptoms etc. -Ravedave 05:28, 4 February 2006 (UTC)
- I don't think they should be merged, ALS is part of the group of motor neuron diseases. The terminology often used in the US and UK is confusing and inaccurate. --WS 12:21, 4 February 2006 (UTC)
- OK then, I take your points. How would you feel about putting more links between the two then. E.g. bits that could go in MND that are here and are not unique to ALS? For example the SOD1 stuff. Or convesely things that are covered in more detail in the MND article could be linked to from bits of the ALS article that are more sparse, e.g. the extra-motor change part, which renders this statement untrue: "Because ALS affects only motor neurons, the disease does not impair a person's mind, personality, intelligence, or memory" --PaulWicks 11:24, 5 February 2006 (UTC) articles could definitlyuse
- Fine with me, be bold. The articles definitly need some work. A description of how the US/world seperate the diseases would probably be an excellent addition. -Ravedave 22:23, 5 February 2006 (UTC)
- OK then, I take your points. How would you feel about putting more links between the two then. E.g. bits that could go in MND that are here and are not unique to ALS? For example the SOD1 stuff. Or convesely things that are covered in more detail in the MND article could be linked to from bits of the ALS article that are more sparse, e.g. the extra-motor change part, which renders this statement untrue: "Because ALS affects only motor neurons, the disease does not impair a person's mind, personality, intelligence, or memory" --PaulWicks 11:24, 5 February 2006 (UTC) articles could definitlyuse
seriously peeps i mean it —Preceding unsigned comment added by 24.58.195.170 (talk) 23:21, 4 October 2007 (UTC)
Picture for article
I thought the article needed a picture so I added one of Lou. If anyone has a better pic feel free to add it... -Ravedave 02:16, 23 February 2006 (UTC)
I find the picture confusing. Both MRI pics have very technical explanations, which are not problematic in themselves; but I think it would be helpful to have some clarification in lay terms and some indication of where in the picture to look. peatswift (talk) 14:15, 12 April 2012 (UTC)
Hmmm. It is rather technical isn't it? On the PD page we have some classic drawings, perhaps something more like this image (http://www.mndassociation.org/life_with_mnd/pmapls/what_is_pma.html) which I made, badly, many years ago. --PaulWicks (talk) 18:35, 13 April 2012 (UTC)
One More Person
Added Zeca Afonso to the list. I feel sorry for you guys!!! love ya'll!
I can't seem to edit the article, but American composer Gordon Jenkins also died of ALS. Could someone add him? Bunbrain (talk) 05:34, 4 December 2008 (UTC)bunbrain
Will do. --PaulWicks (talk) 13:43, 4 December 2008 (UTC)
merge
I don't know why this article was created. It only leads to confusion. ALS is a term predominantly used in the USA whilst MND is used elsewhere. Most forms of MND are ALS and so it is a synonym in the USA. Havng this page detracts from the MND page. This page has "notable suffers of ALS" with Stephen Hawking listed and yet as I understand it because of his longevity most neoroligists believe that he has a different form of MND. [3]. As for the other people listed on this page who knows. Jooler 11:00, 25 February 2006 (UTC) - Note this article was 2 January 2006 created from a redirect to MND. Jooler 11:05, 25 February 2006 (UTC)
Jooler whilst I agree with some of your points I doubt our american readers would see it that way, and in fact they might even suggest we ditch MND and switch to ALS as they have the most patients and researchers! Unless you want to put it to a vote of some kind? --PaulWicks 16:15, 25 February 2006 (UTC)
- <edit conflicted> - Having a page at ALS and one at MND will only mean that US readers will read and edit the ALS page and British and Commonwealth readers will read and edit the MND page and information will be duplicated. It is a situation that was only created in January of this year and it should be restored to the state it was in before then. It is wrong to list patients on this page that have other forms of MND other than ALS, just because ALS is the term used in the US and this is inevitable what is going to happen as US readers come to this page and ignore the MND page. Basically it will only cause confusion to everyone concerned. MND is all encompasing. The best and simplest solution is to restore the situation as it was before January. Jooler 19:17, 25 February 2006 (UTC)
- See conversation above. ALS is a type of MND, and there is ovbiously enough material here for its own article. -Ravedave 19:10, 25 February 2006 (UTC)
- ALS is a type of MND from the perspective of most people in the US this is simply not the case. In their eyes ALS and MND are synonymous. To have an article here as well as there is just too confusing. Jooler 19:17, 25 February 2006 (UTC)
I think it should stay but you might want to try and edit it so that it is clear that ALS is the type of MND which differentialyl affects the upper and lower motor neurones. But yes Jooler I agree that there will become a split between editors from each side of the Atlantic. TBH I only have time to work on MND not ALS as well as it is, as you say, duplicative and not worth my time justifying my edits to two sets of editors. I'm not convinced by merge, nor delete, but I'd prefere a BOLD edit to make it clearer. The worst that can happen is someone can revert some of them, why not give it a go?--PaulWicks 14:40, 27 February 2006 (UTC)
Because the articles have been fixed to clarify what is MND and what is ALS and becasue of this link I have removed the merge tag. -Ravedave 04:59, 23 March 2006 (UTC)
- I see this article continue to drift off course on a few points. For instance, the stuff about ALS not affecting the mind is untrue. For instance, see Ringholz et al (2005)(http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16116120&query_hl=1&itool=pubmed_docsum). However I will continue to work on the MND article only as I don't have time to edit both. I've been working recently on an international website for people with this illness and I have been experimenting with the term "ALS/MND". This is what is used at the international symposium and also the ALS/MND Alliance. What would people think of merging the articles into ALS/MND and having a one-stop shop for all your needs? --PaulWicks 21:14, 29 May 2006 (UTC)
What Source
"In 90 to 95 % of all ALS cases, the disease occurs apparently at random with no clearly associated risk factors. Patients do not have a family history of the disease, and their family members are not considered to be at increased risk for developing ALS.
About 5 to 10 % of all ALS cases are inherited..."
Where is this from?
Fairly common knowledge amongst professionals, but if you want one try: Hand CK, Rouleau GA. Familial amyotrophic lateral sclerosis. Muscle Nerve 2002;25:135-59.--PaulWicks 14:37, 27 February 2006 (UTC)
Dr. Brooks
Why is there no metion of Dr. Benjamin Brooks, the UW scientist who discovered Tamoxifen's powers against Als and has discovered equally important drugs that combat ALS?
There's not much mention of individual scientists; for example you might say Bob Brown or Bud Rowland are equally important people in ALS. See labile affect for brief precis of Neurodex.--PaulWicks 09:26, 7 March 2006 (UTC)
Stephen Hawking
I don't believe Stephen Hawking was ever diagnosed with ALS. He has some form of motor neurone disease, but I've never heard it described as ALS. In fact, he's lived with his condition for 40 years, which would make an ALS diagnosis extremely unlikely. vpoko 18:39 05 Apr 2006
- From Hawkings website "I am quite often asked: How do you feel about having ALS? " -Ravedave 22:09, 5 April 2006 (UTC)
From the MND talk page: Stephen Hawking says in his introduction to "A Brief History of Time" that he has ALS. If he was being non-specific about his dx, as he is British, he would have said he has MND. Therefore he has ALS, albeit the most slowly progressive occurrence known. Cheers --PaulWicks 21:59, 1 February 2006 (UTC)--PaulWicks 08:55, 6 April 2006 (UTC)
- He's British but his audience is American. Jooler 09:20, 12 April 2006 (UTC)
Not in the British print of the book. Please sign your comments. --PaulWicks 13:16, 12 April 2006 (UTC)
- I think you will find that the original publication is American and uses American spellings and phraseology and this is not changed for the British reprint. Jooler
- Stephen Hawking is the person with the longest recorded history of ALS. However he is severely disabled and in a continuing state of deterioration, albeit a slow one. ALS is a heterogeneous disease; sometimes it lasts upwards of 10 years, the quickest I ever heard of was only a couple of months. There are extremes at both end, and Prof Hawking is the greatest extreme of longevity. The fact that he is famous makes him stand out more but I always ask people how many other astrophysicists they can name. Usually none. Prof Hawking is obviously very gifted but he is also regularly endorsed as the most intelligent person on the planet; this is quite unlikely. I think part of the interest in Prof Hawking is that there is a seductive notion of a brilliant mind trapped in a failing body. It is a theme that often appears in science fiction and is a manifestation of mind/body dualism. If someone wishes to claim that Prof Hawking does not have ALS, please provide some suggestions for what he does have, and cite the evidence they have to suggest such a thing. The original issue was this: Vpoko stated that Prof Hawking had never stated he has ALS as opposed to MND. Myself and Ravedave have provided evidence that he has in fact stated he has ALS. The alternatives are that he is lying (why?) or that you know more than the neurologists that have examined him. --PaulWicks 09:08, 15 April 2006 (UTC)
- Stephen Hawking has never permitted a neurologist to examine him since he was 21 years old. He has gone on record stating this. The fact that he is an extraordinarily gifted theoretical physicist is not a sufficient qualification to render neurologic diagnoses. Because of the time course and the lack of dementia, more likely than ALS in his case is Hereditary spastic paraplegia; I have heard it suggested that one reason he might wish to conceal an HSP diagnosis behind a false diagnosis of ALS is to prevent genetic discrimination against his children. HSP is genetic, of course; ALS is a sporadic illness.
- Stephen Hawking is the person with the longest recorded history of ALS. However he is severely disabled and in a continuing state of deterioration, albeit a slow one. ALS is a heterogeneous disease; sometimes it lasts upwards of 10 years, the quickest I ever heard of was only a couple of months. There are extremes at both end, and Prof Hawking is the greatest extreme of longevity. The fact that he is famous makes him stand out more but I always ask people how many other astrophysicists they can name. Usually none. Prof Hawking is obviously very gifted but he is also regularly endorsed as the most intelligent person on the planet; this is quite unlikely. I think part of the interest in Prof Hawking is that there is a seductive notion of a brilliant mind trapped in a failing body. It is a theme that often appears in science fiction and is a manifestation of mind/body dualism. If someone wishes to claim that Prof Hawking does not have ALS, please provide some suggestions for what he does have, and cite the evidence they have to suggest such a thing. The original issue was this: Vpoko stated that Prof Hawking had never stated he has ALS as opposed to MND. Myself and Ravedave have provided evidence that he has in fact stated he has ALS. The alternatives are that he is lying (why?) or that you know more than the neurologists that have examined him. --PaulWicks 09:08, 15 April 2006 (UTC)
- I think you will find that the original publication is American and uses American spellings and phraseology and this is not changed for the British reprint. Jooler
The tragedy here, of course, is that the story of Stephen Hawking gives false hope to every patient newly diagnosed with ALS. None can expect to live even a tenth as long as Hawking has. 75.15.121.220 (talk) 21:20, 23 June 2008 (UTC)
- My copy says: A brief history of time, originally published in Great Britain by Bantam Press 1988. Page ix says "Apart from being unlucky enough to get ALS, or motor neurone disease, I have been fortunate in almost every other respect". So far I have seen a "recognized" instead of the more British "recognised" but this is not a hard and fast rule. "Behaviour" is spelt with a u, as is "colour". So I am not entirely convinced by Jooler's suggestion.--PaulWicks 09:21, 15 April 2006 (UTC)
- Ahh well I don't have the book, so had no way of checking but anyway
- My copy says: A brief history of time, originally published in Great Britain by Bantam Press 1988. Page ix says "Apart from being unlucky enough to get ALS, or motor neurone disease, I have been fortunate in almost every other respect". So far I have seen a "recognized" instead of the more British "recognised" but this is not a hard and fast rule. "Behaviour" is spelt with a u, as is "colour". So I am not entirely convinced by Jooler's suggestion.--PaulWicks 09:21, 15 April 2006 (UTC)
- From http://brain.hastypastry.net/forums/showthread.php?t=10847
- I have discussed Steven Hawking’s case with some Neurologists. Most expressed the opinion he probably does not have ALS but PMA, which is another way of stating he probably has only lower motor neuron disease and not upper motor neuron disease. I also understand he refuses to be tested for upper motor neuron disease. One neurologist told me Hawking refused to let the neurologist test his reflexes for upper motor neuron disease. If Steven Hawking is a PMA case, it would explain why he has progressed so slowly. PMA is often very slow and is often not considered life threatening.
- My neurologist several years also volunteered to me that he didn't think that Hawking has ALS. He told me what he thought he had and it may well have been PMA. It was before ALS was on my radar screen and prior to my own diagnosis.
- I think your right he probably does not have ALS but in the Uk we only have one catagory when describing this condition for the majority of the time and that is MND, for the punters anyway.
- Harry and John's neurologists share the view of ours: it is highly unlikely that Steven Hawking has ALS. Unfortunately most people immediately associate Steven Hawking --- and his longevity -- with ALS because they are not as educated as the average neurologist.
- etc..
- Jooler
- I thought everyone in the world had a copy just nobody had finished it?! =)
- There have been other conversations like this one including on BT and a website I run at www.build-uk.net. First off you could try emailing Prof Hawking's assistants and perhaps asking them to help edit the wikipedia article on him. You could ask about the sorts of things that are listed in the BT thread but I imagine he gets asked that a lot. PMA is a slowly progressive form of MND but it is still fatal sadly. The only form that might qualify as non-fatal is primary lateral sclerosis. However the thing with the subtypes is that pathologically there is a great deal of overlap, so when we say PLS or PMA we might really mean LMN- or UMN-predominant rather than "exclusive". Something I've put together on this can be found here: http://wiki.iop.kcl.ac.uk/default.aspx/Neurodegeneration/Classification%20of%20Motor%20Neurone%20Diseases.html
- Jooler
- The other thing to consider is that Prof Hawking is on a vent, specifically a trache. Most pwMND are not offered this in the UK for various reasons. --PaulWicks 08:41, 17 April 2006 (UTC)
I belive this whole discussion started because I added a Lou Gehrig picture someone else uploaded, which apparently was a copy-vio, so the next best person I could think of was Mr. Hawking, who's picture I added. If anyone can find a good image of Gehrig we can use, I belive it would be much better. If Hawking does have ALS is is an outlier, so Gehrig would be a better pic.-Ravedave 01:01, 29 April 2006 (UTC)
I think this line of thought occurs frequently in people discussing MND or ALS so I don't think it's attributable entirely to your picture. Also, as Hawking is by far the most recognised person with MND and the only well-known person currently alive with it I think his photo should stay. Perhaps Gehrig's photo in addition would be an improvement though.--PaulWicks 11:55, 30 April 2006 (UTC)
What brought you here?
I just want to hear people stories. My Mother-in-law has ALS and I have been involved with the minnesota ALSA, once I became a wikipedia editor I thought I would try and help improve this page. -Ravedave
Did my PhD in MND on cognitive, emotional, and behavioural changes within sporadic and familial ALS as well as PMA. Also did some brain scanning stuff, tiny bit of epidemiology, and some work on depression. Also I run www.build-uk.net --PaulWicks 15:19, 28 April 2006 (UTC)
I've been researching ALS for several years after learning of my family history. My grandfather died of ALS, as did his mother. My uncle (7th person in the family to be diagnosed) and mother have both been diagnosed. Based on my mom's diagnosis and genetic testing, I have a 50% chance of having the defect - That's a very strong motivating factor to find out more information. -STG0459 24 October, 2006
My father has been diagnosed, and that even though they told me his kind isn't genetic and I'm not at risk, but it's still important to me to find out more. I just wish I could understand more of what is written here... Computers and Physics stuff I'm golden, even Quantum, but once it turns biological it stops making sense to me. Daropedia (talk) 01:30, 11 September 2011 (UTC)
Mao Zedong
The article on Mao Zedong indicates that it is uncertain what, specifically, he had. Both Parkinson's disease and motor neurone disease are mentioned as possibilities. Thus I'm removing him from the list since it isn't clear that he belongs here. -- Zawersh 23:06, 30 April 2006 (UTC)
- Consider adding Jed Bartlett. I added Pro Hart. - Richardcavell 06:39, 16 May 2006 (UTC)
- Sure Jed Bartlett is a fictional character and had MS? --PaulWicks 07:34, 16 May 2006 (UTC)
"Famous" People with ALS
I don't mean to be offensive, but is it just me, or as time goes on are the people being added as "famous" getting considerably less famous? Is there any kind of guidance on how well-known someone should be? I would have said that Richard Olney the neurologist who is an ALS expert and now has it himself is significantly more famous than a sports coach or musician. However to many outside the field he is probably not considered famous at all! --PaulWicks 12:42, 23 May 2006 (UTC)
Bump! Anyone else got views on this? --PaulWicks 09:28, 28 June 2006 (UTC)
I've been googling people who are on the list so far and they've generally been people who can be classified as famous insofar as they achieved national or international recognition in a particular field; such as Viola Tunnard who has a biography on Amazon, or Roy Walford who was in the Biosphere 2 project. My view at present is not to include people who only are famous within a local region or a particularly narrow field, such as someone well known in a single US state. Reason being that if you extend it out far enough this list will become a fairly all-enveloping one; after all ALS is rare but it's not that rare! I'm still flying blind on this one though and would appreciate some input from other editors, even if it's only a "me too" or a "I disagree". Finally, it'd be great if people adding names to this list would consider registering usernames. Cheers, --PaulWicks 23:35, 1 July 2006 (UTC)
- Agree, as an easy work around perhaps we could set a minimum google result limit. -Ravedave 23:56, 1 July 2006 (UTC)
- I just kind of feel that "notable" people, makes it seem like all the others don't matter.
Is there anyone famous from outside the US with this disease?
Please sign your comments. Stephen Hawking is outside the US, as was Jimmy Johnstone and David Niven. However these latter two are probably less widely known internationally. --PaulWicks 22:34, 29 July 2006 (UTC)
A couple more people have been removed from the list after recent updates. As a general pointer, if the person does not have a wikipedia article written about them, or it is impossible to find any evidence on Google that they exist, or if they can not really be considered as well known outside of a relatively small sphere of influence, they are unlikely to remain on the list. This is not meant to cause offence to people by suggesting their friends or relatives are not "notable people", but Wikipedia is an encyclopedia and to list everyone affected by a disease with ~80,000 patients worldwide would soon become unmanageable. There is an ALS/MND patient registry available online at PatientsLikeMe which has more than 350 names from around the world and will act as a permanent monument to the hundreds of great people who have been afflicted by this terrible illness. Thanks, --PaulWicks 08:27, 16 September 2006 (UTC)
- I have removed all redlinked articles. If these people are both notable and have ALS, then there should be articles (WITH references) that testify to that. No article, then no source. --Calton | Talk 05:45, 11 October 2006 (UTC)
- I agree with that and think that a "list of famous people with ALS" article should be started. Then people can add whoever they want and the article doesn't get filled with cruft. -Ravedave (help name my baby) 05:57, 11 October 2006 (UTC)´
- I think the alternative, that has worked in at least one case in the past, is to write to the editor that added that person and ask them to write that article themselves. More content, no? I will write the page for Jenifer Estess--PaulWicks 10:43, 11 October 2006 (UTC)
- I agree with that and think that a "list of famous people with ALS" article should be started. Then people can add whoever they want and the article doesn't get filled with cruft. -Ravedave (help name my baby) 05:57, 11 October 2006 (UTC)´
Jon Stone is credited as the creator of Sesame Street, however the Sesame Street article credits Jim Henson as the creator. Jon Stone's bio page only credits him as a writer and director for Sesame Street.
- Just a reminder that there is an ALS/MND patient registry available online at PatientsLikeMe which has more than 500 names from around the world and will act as a permanent monument to the hundreds of great people who have been afflicted by this terrible illness. Please do NOT add people to the "notable patients" list unless they already have a wikipedia article about them. Thanks. --PaulWicks 17:39, 7 March 2007 (UTC)
(Edit)Famous guitarist suffering from ALS: http://en.wikipedia.org/wiki/Jason_Becker —Preceding unsigned comment added by 83.194.135.63 (talk) 11:27, 5 July 2009 (UTC)
whence the name? "Amyotrophic lateral sclerosis"
I actually had a business partner who died of ALS many years ago. But for the life of me, I don't understand what the name means. Can someone add an explanation of it to the introductory paragraph? Kaimiddleton 21:57, 17 September 2006 (UTC)
Want to avoid a copyvio but this is a good summary: A-myo-trophic comes from the Greek language. "A" means no or negative. "Myo" refers to muscle, and "Trophic" means nourishment---"No muscle nourishment." When a muscle has no nourishment, it "atrophies" or wastes away. "Lateral" identifies the areas in a person's spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates it leads to scarring or hardening ("sclerosis") in the region. from http://www.alsa.org/als/what.cfm
Personally I don't think this should be in the lead paragraph but if other authors agree it should be in there somewhere then by all means put it in! --PaulWicks 17:28, 20 September 2006 (UTC)
- I tryied to un-copy-vio it a bit and added it. I think it is a great addition. -Ravedave (help name my baby) 04:36, 25 October 2006 (UTC)
Moving refs
I took a bunch of websites that were in the references section and put them into external links because they didn't seem to be serving as citations for specific statements, and because with the footnote style referencing the numbers started over with them and it was confusing (because a statement in the text will have the citation 3, e.g., and there are two 3's in the refs). Of course, if my edit was wrong, you can undo it. But i'd suggest rather than that making everything consistent by putting them all into the footnote format with this template: <ref name=" ">{{cite web | url= | title= | author= | date= | publisher= | accessdate=2006-10-20 }}</ref>. But you can only do that if you have specific sentences for them to reference. Thanks! Peace, delldot | talk 06:47, 2 December 2006 (UTC)
Plagiarism!!!
Hey! I'm currently writing a 5-page essay about ALS and spent a lot of time on the page http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_amyotrophiclateralsclerosis.htm before coming on here to see what was written. What I realised was that LARGE parts of this page is just in fact copied off the page I listed above. But no source has been listed!!! Isn't this just plain old plagiarism??? I mean... in the very least the source should be listed.... glad to hear thoughts from you others on this....! Gilraen690 11:43, 13 January 2007 (UTC)Gilraen690
- Hi there Gilraen, thanks for your question. If you look at the top of this discussion page you should see the following text which has been there for quite some time:
- Some text in this article was originally taken from http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_amyotrophiclateralsclerosis.htm (public domain)
- Thankyou for your concern. --PaulWicks 13:40, 13 January 2007 (UTC)
Oh, sorry!!! Gilraen690 18:26, 13 January 2007 (UTC)Gilraen690
Etiology/Pathogenesis section
I made revisions to the etiology section (formerly known as "Aetiology" and "Causes"). I changed the first two paragraphs to reflect the current scientific opinion that free radical damage does not likely play a major role in pathogenesis. This is based on a number of studies which showed that both active (dismutase-active; retains antioxidant capacity) and inactive forms of mutant SOD1 can cause ALS-like disease in murine models of the disease. Additionally, when tg SOD1 mutant mice also expressed wild-type SOD1 (which functions in a normal antioxidant manner, to the best of current knowledge), no change in disease course was found (even in the case of over-expression). I also adjusted the second paragraph to omit the use of "amyloid-like" as a phrase to describe protein aggregates, as amyloid accumulations are generally considered to be extracellular. Also, I added information about current theories on SOD1 mutant aggregates in disease pathogenesis. JHUbme24 07:09, 24 January 2007 (UTC)JHUbme24
Thankyou, that section needed the attention of a good labrat =) --PaulWicks 10:48, 24 January 2007 (UTC)
Citations needed re ALS Association
I've flagged where I reckon we need citations re the ALS Association and it disregarding its donors wishes. It reads like these are the words of one of its digruntled donors, and I doubt there is a reputable source that could be quoted on this. Georgethe23rd 14:07, 3 June 2007 (UTC)
Lancet review
There is a review in the latest Lancet that could be useful here: Mitchell JD, Borasio GD (2007). "Amyotrophic lateral sclerosis". Lancet. 369 (9578): 2031–41. doi:10.1016/S0140-6736(07)60944-1. PMID 17574095.
- PMID 17671248 - this weeks NEJM study on genetic predisposition for sporadic ALS. Fifty genes are candidates, but FLJ10986 stands out. JFW | T@lk 20:27, 2 August 2007 (UTC)
Good job, everyone
I am passing through, assessing pages for WPMED. This one looks good enough to get a GA rating. Keep up the good work. --Una Smith 02:43, 13 July 2007 (UTC)
Guamanian
Have never heard the variant on Guam referred to as an own grupp of ALS, and I have been researcher in this field for years.
Beside the familial forms, you often seperate the bulbar onset ALS from limb onset, because bulbar onset progress more rapid. Further it would perhaps be worth mention ALS with front temporal dementia (FTD) as this is a form that got a lot of attention lately.
A number of areas in the world have increased prevalence of ALS. Guam is not unique. There are Kii in Japan, french west-indies and north Scandinavia. The ALS on Guam have some special features but that has no relevance for people with ALS in the rest of US. —Preceding unsigned comment added by 24.131.239.129 (talk) 06:30, 24 October 2007 (UTC)
I would agree that a better term for this cluster might be something like "Western Pacific ALS". Guamian ALS is not a diagnostic category as such, and in fact it would make more sense to refer to lytico-bodig. It is still worth mentioning as it is the foundation for some theories as to the causes of ALS. Also please don't consider Wikipedia to be relevant only to US readers!--PaulWicks 16:32, 24 October 2007 (UTC)
External links
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 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.
External links are not required in Wikipedia articles. They are permitted in limited numbers and in accordance with the policies linked above. If you want to include one or more external links in this article, please link directly to a webpage that provides detailed, encyclopedic information about the disease. Thanks, WhatamIdoing (talk) 04:24, 13 April 2008 (UTC)
- I've just purged a bunch more links. C'mon, folks: Wikipedia is not a support group, a web directory, or a patient resources listing. It's an encyclopedia: a collection of academic-style information. WhatamIdoing (talk) 17:23, 14 June 2008 (UTC)
- Well, I've got to say, policy, rules, whatever, I think some of these edits could have been done with a little more sensitivity. Remember a lot of noobs will be adding friends and relatives (some deceased) to the "notable people" section and it's best to try and be a little delicate. Some of the edit summaries are also inaccurate, for instance "Muscular Dystrophy" is an umbrella term that refers to a number of neurodegenerative wasting conditions including ALS, so the MDA Europe link was not totally irrelevant. Again, I know this is not the place to argue (I have no interest in arguing about Wikipedia policy) but it seems ridiculous to me that useful links are purged from the number 1 google hit for "ALS" whilst there are a few dozen frankly irrelevant internal wikilinks in the "pathology of the nervous system" template at the bottom of the page. Now of course I can understand having to be careful about links to commercial sites (I've zapped a few myself) but the ALS community requires all the help and increased cross-fertilization that it can get. In this specific instance I think Wikipedia's policies are ultimately detrimental to its users. --PaulWicks (talk) 18:49, 16 June 2008 (UTC)
- Incidentally this debate has been commented upon here: http://www.thehealthcareblog.com/the_health_care_blog/2008/04/wikipedia-time.html --PaulWicks (talk) 18:50, 16 June 2008 (UTC)
- I understand your point of view, but articles are not written for the convenience of any single audience, and specifically not for patients (and their loved ones) or for medical students (the two primary problems that medicine-related articles have in their tone). I believe that patients and their families are both smart enough and motivated enough to click on more than one link at Google, so Wikipedia's long-standing decision not to be a web directory is unlikely to have any practical harm for the people you worry about.
- As for MDA-Europe: The only time ALS is mentioned on that page is in a Google AdSense advertisement. That's hardly a recommendation for promoting that page as being useful to anyone who is reading about ALS, much less ALS patients and their families. However, in general, if you think I have removed a link under WP:ELNO that actually qualifies under WP:EL, then please restore it and explain your reasoning here on the talk page. WhatamIdoing (talk) 17:31, 24 June 2008 (UTC)
Stefano Borgonovo
Hi, He is not dead. He just announced the world he has ALS —Preceding unsigned comment added by 213.156.48.97 (talk) 15:28, 24 September 2008 (UTC)
Stefano Borgonovo and Piergiorgio Corno are not dead. —Preceding unsigned comment added by 79.7.153.129 (talk) 20:13, 8 October 2008 (UTC)
Mistake in the article
{{editsemiprotected}}
You have put Stefano Borgonovo in the people who have died from this disease, while he's still alive.
Thanks
DrScarecrows (talk) 13:58, 9 October 2008 (UTC)
Done, he wasn't mentioned in the cited source for that section anyway, and his Wikipedia article seems to agree with you. Thanks for the correction. ~ mazca t|c 17:12, 9 October 2008 (UTC)
- In fact, I've removed that entire sentence from the list. While I can't really read the source, not speaking Italian, it's clear that at least some of those people are not dead, so they don't belong in the 'dead people' section. I'll leave it for someone more familiar with the topic to replace the correct information, but from a BLP point of view it's probably safer to remove it while it's ambiguous. ~ mazca t|c 17:23, 9 October 2008 (UTC)
Lou Gherig and Stephen Hawking
About this change, which de-emphasizes Lou Gehrig (that is, the only reason the typical older American knows about ALS's existence) and adds Stephen Hawking:
Many people, including every neurology expert I've ever heard of, have serious doubts about whether Stephen Hawking actually has ALS. (They typically suggest that he probably has progressive muscular atrophy instead; see this for one example). Hawking has apparently refused to see a neurologist since his initial diagnosis. Do we really want to emphasize him as a "typical" ALS patient? WhatamIdoing (talk) 00:13, 21 November 2008 (UTC)
- I agree. Because of his fame, but also his unrepresentative experience of the disease, I've heard he's the best and worst example of ALS. Georgethe23rd (talk) 09:08, 21 November 2008 (UTC)
- A frequent debate online in the ALS world, sadly this contentious topic generates a lot of misinformation based on rumor. It is not true that Prof Hawking has not seen a neurologist since his diagnosis. Although many neurologists speculate about whether or not he has ALS, Prof Hawking states in the English version of Brief History that he has ALS specifically, not the broader term MND which includes PLS and PMA. Finally, it is not unheard of for people with ALS to survive for a long time. Here's a reference (Turner MR, Parton MJ, Shaw CE, Leigh PN, Al-Chalabi A. Prolonged survival in motor neuron disease: a descriptive study of the King’s database 1990-2002. J Neurol Neurosurg Psychiatry. 2003 Jul;74(7):995-7. PMID 12810805). I personally think he's a good example because he's so memorable (who else with ALS has been on The Simpsons?) but also because he inspires hope in patients that this is not necessary a 2-5 year prognosis. --PaulWicks (talk) 19:09, 23 November 2008 (UTC)
- changed it from commonly known as to commonly in North America, almost nobody outside the US knows it as Lou Gherig. Markthemac (talk) 01:36, 15 July 2009 (UTC)
Lyme disease
I think the statement citing one case of documented lyme disease leading to clinical improvement following treatment is very misleading. If you read the full text of the article (not just the abstract) I am not sure it is even true. The literature is essentially void of such cases outside of this one. There are many dishonest people out there telling people with ALS that they in fact have lyme disease, preying on their desperation to rob them for thousands of dollars for unnecessary treatment --- I wonder if this prompted the inclusion of this article. Please clarify that this one case is a single exception rather than the rule. -- User:74.4.81.27 (User talk:74.4.81.27)
- Thanks for the note. I've removed some of the material that seemed to stray off-topic. WhatamIdoing (talk) 00:36, 3 January 2009 (UTC)
Semi-protected?
I wanted to add information on hospice and the US hospice criteria. It has come up several times to me, and it would be helpful to have it added. But this page is semi-protected. How can I become an editor? Jeff Halladay (talk) 16:42, 3 February 2009 (UTC)
- Jeffrey, you already are an editor! If it's not letting you save changes you might need to make a few edits on other non-protected pages or wait a few days. See these guidelines: http://en.wikipedia.org/wiki/Wikipedia:User_access_levels#Autoconfirmed_users, cheers --PaulWicks (talk) 13:41, 4 February 2009 (UTC)
Huh?
"As a direct result of using all of one's fast" ... all of one's fast???? •Jim62sch•dissera! 21:48, 1 March 2009 (UTC)
- Weird. Fixed it. --PaulWicks (talk) 22:08, 1 March 2009 (UTC)
Is this term used outside the US?
I've accessed this page after watching a CBS News Tonight item on it. I've never heard of this variant of motor neurone disease in the UK. Is this term used internationally, or is it just limited to the US? --80.176.142.11 (talk) 23:51, 2 July 2009 (UTC)
- Which term? Do you mean "Lou Gehrig's disease" or "Amyotrophic lateral sclerosis"? The latter is international (as may be seen by clicking on the German or Dutch version on the right hand side of the article page. The former term is more U.S.-centric but may be used elsewhere.
⋙–Berean–Hunter—► ((⊕)) 23:57, 2 July 2009 (UTC)
The short version is that Motor Neurone Disease (MND) is called ALS in the US.--PaulWicks (talk) 22:54, 3 July 2009 (UTC)
it isn't commonly known as Lou Gherig outside the US, so i changed it commonly known as Lou Gherig in North America. Markthemac (talk) 01:37, 15 July 2009 (UTC)
Reference Translation
Is there any way to get english translations for these 2 references ([4] and [5] - currently the 7th and 8th references in this section of the article)?
--K10wnsta (talk) 21:25, 20 November 2009 (UTC)
User:Dr.Milánkovits recent changes
I've removed the claim that "extraordinary" amounts of ceftriaxone can stop ALS. The source is a patent application, which is not a reliable source. Please refer to WP:REDFLAG. Celestra (talk) 19:47, 1 January 2010 (UTC)
Weird sentence
"The patient may ultimately lose the ability to initiate and control all voluntary movement; bladder and bowel sphincters and the muscles responsible for eye movement are usually (but not always) spared." Maybe this should be separated into two sentences because I don't know if only eye movement is spared, or if the bladder, bowel sphincters and eye muscles are spared.70.171.205.113 (talk) 02:55, 16 April 2010 (UTC)
People affected by ALS section is getting too long?
Interested in the views of other editors, but IMHO this section is getting far too long, rendering the article difficult to read. One solution to this would be to tag the bios of people with wikipedia articles with the tag affected by MND [6] or died from MND [7]. I suggest rather than make a new one for ALS we use this tag but see if we can change it to say "ALS/MND" perhaps? I would also reduce the number of "well-known" people with ALS from the introductory paragraph. Thoughts? --PaulWicks (talk) 12:35, 19 April 2010 (UTC)
- I have been bold and removed this section entirely. It doesn't exist for most diseases (notable cases of hypertension anyone?) and making reasonable standards of notability is rather difficult. Stephen Hawking and Lou Gehrig are already covered in the intro, and they are by far the most notable. --PaulWicks (talk) 01:58, 10 July 2010 (UTC)
- To be honest, it's probably a reasonable excision (though I fear that you're going to get some serious hue and cry about it). I've heard ALS described – fairly, I think – by professionals in the field as "the most common rare neurological disease". There are something like thirty thousand living patients with the disease just in the United States; figure on ten times that number worldwide — and ten times over again who have died from the disease in the last century. This is a list that would be huge if complete, and it would grow rapidly and without limit. TenOfAllTrades(talk) 03:34, 10 July 2010 (UTC)
- We could move it to a subpage People with ALS. We have done similar things at the ADHD Doc James (talk · contribs · email) 03:37, 10 July 2010 (UTC)
- This is one of those things that would probably be better handled through the use of categories, rather than articles. TenOfAllTrades(talk) 04:07, 10 July 2010 (UTC)
- Using categories means the patients are at least notable enough to have a WP entry. I'd agree with that.--PaulWicks (talk) 13:35, 12 July 2010 (UTC)
- This is one of those things that would probably be better handled through the use of categories, rather than articles. TenOfAllTrades(talk) 04:07, 10 July 2010 (UTC)
- We could move it to a subpage People with ALS. We have done similar things at the ADHD Doc James (talk · contribs · email) 03:37, 10 July 2010 (UTC)
- To be honest, it's probably a reasonable excision (though I fear that you're going to get some serious hue and cry about it). I've heard ALS described – fairly, I think – by professionals in the field as "the most common rare neurological disease". There are something like thirty thousand living patients with the disease just in the United States; figure on ten times that number worldwide — and ten times over again who have died from the disease in the last century. This is a list that would be huge if complete, and it would grow rapidly and without limit. TenOfAllTrades(talk) 03:34, 10 July 2010 (UTC)
Misdiagnosis of some traumatic brain injury as ALS
NYT reports under Study Says Brain Trauma Can Mimic A.L.S." that ALS can be diagnosed only by examination of the spinal cord, presumably for the foreseeable future only post-mortem, and appears to be drastically over-diagnosed, at least among those subject to repeated head trauma. Lou Gehrig's long history of head-trauma sports and "Iron Horse" rep for playing hurt will, IMO, make him the presumptive poster-child for the misdiagnosis, if not for playing hurt.
My impulse was to start editing, but instead i'm going to see first if anyone else is having the same impulse, here or at Talk:Lou Gehrig. Edit conflicts are such a drag!
--Jerzy•t 21:59, 18 August 2010 (UTC)
- Please do not: see WP:MEDRS and WP:RECENTISM-- sourcing medical articles to the media is not the way to go. SandyGeorgia (Talk) 01:39, 19 August 2010 (UTC)
- The most applicable portion of Recentism reads
- Recentism is a symptom of Wikipedia's dynamic and immediate editorial process, and has positive aspects as well — up-to-date information on breaking news events, vetted and counter-vetted by enthusiastic volunteer editors, is something that no other encyclopedia can offer.
- I favor tracking down the peer-reviewed papers, and at least lk'g directly to them, but the when peer-reviewed work is the focus of the NYT's article, they generally do a damn good job of translating med research into what people want (and some some cases have a real need) in the way of what sounds like (A) a breakthru and (B) an imminent impetus to accelerating the military's halting efforts to stop telling soldiers to ignore these injuries.
--Jerzy•t 08:29, 19 August 2010 (UTC)
- No they (NYT) don't usually do a good job of reporting on medical matters. See WP:MEDRS. And primary studies, even if peer-reviewed, should be used sparingly, if at all, in medical articles. Until/unless a secondary review covers the material-- or multiple secondary non-medical sources review and report the primary sources accurately and indicate due weight is needed for all viewpoints- it shouldn't be added here. Please provide PMIDs to the primary sources. SandyGeorgia (Talk) 11:38, 19 August 2010 (UTC)
- I'll endorse Sandy's comment. Extreme care needs to be used when we interpret news reports on medical discoveries, which in turn interpret peer-reviewed scientific publications. Of particular note is that the original peer-reviewed paper doesn't mention or make claims about Lou Gehrig — that's just something in the press kit to draw attention. While there is speculation (including, I admit, by the scientists who wrote the paper) that Gehrig may have had chronic traumatic encephalopathy leading to motor neuron impairment (and not classic ALS), there is no definitive evidence of a misdiagnosis. Further, such evidence will be very difficult to obtain, as Gehrig's remains were cremated: a process which tends to hamper post mortem histopathological examination. Deciding that Gehrig should be the 'poster child' for misdiagnosis is an assertion that isn't even firmly supported by the Times article, let alone the original J. Neuropath. Exp. Neurol. paper (abstract only, subscription required for full text).
- I find the reported presence of a TDP-43 frontal lobar proteinopathy very intriguing, as TDP-43 deposits are also seen in the spinal cords of patients with sporadic ALS. There has been speculation in the neurology community that 'classic' ALS and certain types of frontotemporal dementia may have similar underlying biochemical roots, and sit as different points along the same continuum of diseases. Very interesting stuff. TenOfAllTrades(talk) 13:28, 19 August 2010 (UTC)
- Reading is fundamental, and i think it's a very bad reading to
insinuatesay what colleagues may take to mean that (emphasis added) my words --- will, IMO, make him the presumptive poster-child for misdiagnosis
- (which also appeared not as an article-content suggestion, but as input on the significance of the event in question) -- are "an assertion" to the effect (again, emphasis added) "that Gehrig should be the 'poster child' for misdiagnosis". If that was not your insinuation
was unintentional, a great way of clarifying that would be to restate your point about how we should precede, with wording that avoids the effect of casting me as the poster child for unwise editing.
--Jerzy•t 03:41 , 06:56 & 07:01, 21 August 2010 (UTC)
- Le bon mot is also pretty damn important [blush]. I have been habitually using "insinuate" with a meaning that does not imply any intent, tho musing on the term led me to an encounter with my personal standard dictionaries. They seem to construe it to entail intentionally communicating more than is made explicit. "Say what reasonable others may take to mean..." is an awkward way of saying what i have been meaning by "insinuate that...". I plead guilty to stupidity, in presuming (of a culture that routinely ignores the need for the old, strict, and/or technical senses of "imply", "infer" and "verbal") enuf good sense for there to be a single word that captures all of what "insinuate" means, excepting the baggage of claiming to read the mind of the speaker who has created such an occasion.
--Jerzy•t 06:56, 21 August 2010 (UTC)
- Dear all, WRT the NYT article, please see this blog post by the head of research at the ((Motor Neurone Disease Associaton)): http://mndresearch.wordpress.com/2010/08/18/when-is-lou-gehrig%E2%80%99s-disease-not-lou-gehrig%E2%80%99s-disease/, thanks --PaulWicks (talk) 13:29, 23 August 2010 (UTC)
- Le bon mot is also pretty damn important [blush]. I have been habitually using "insinuate" with a meaning that does not imply any intent, tho musing on the term led me to an encounter with my personal standard dictionaries. They seem to construe it to entail intentionally communicating more than is made explicit. "Say what reasonable others may take to mean..." is an awkward way of saying what i have been meaning by "insinuate that...". I plead guilty to stupidity, in presuming (of a culture that routinely ignores the need for the old, strict, and/or technical senses of "imply", "infer" and "verbal") enuf good sense for there to be a single word that captures all of what "insinuate" means, excepting the baggage of claiming to read the mind of the speaker who has created such an occasion.
- Reading is fundamental, and i think it's a very bad reading to
- The most applicable portion of Recentism reads
- I'll go along with excluding mention of Lou Gehrig in this section (although it is probably legitimate, as some of the study's authors later specifically said that there were real implications for Lou Gehrig's case). However, to call the "Journal of Neuropathology & Experimental Neurology" an unreliable source is a bit unreasonable, IMO. DoctorEric (talk) 18:26, 24 August 2010 (UTC)
- Who has done that? The issue is primary sources vs. secondary reviews-- see WP:MEDRS. The NYT would be a secondary source, but laysources rarely get it right, as in this case. SandyGeorgia (Talk) 18:32, 24 August 2010 (UTC)
- I'll go along with excluding mention of Lou Gehrig in this section (although it is probably legitimate, as some of the study's authors later specifically said that there were real implications for Lou Gehrig's case). However, to call the "Journal of Neuropathology & Experimental Neurology" an unreliable source is a bit unreasonable, IMO. DoctorEric (talk) 18:26, 24 August 2010 (UTC)
- It seems that Alan Schwarz has been doing something of a long running series on brain injury in sports, going back to at least February 2007.[8][9][10] If even after that he still hasn't got the taxonomy right there is clearly a case to be made that NYT sports reporters are not reliable secondary sources for medical content. Sorry if this comes as a shock to anyone here. LeadSongDog come howl! 20:23, 24 August 2010 (UTC)
A documentary segment on ALS and sports on "Real Sports with Bryant Gumbel" (HBO Sports), shown on TV today, presents evidence that sports figures (including Lou Gehrig) who had many head injuries (Gehrig had fractures, loss of consciousness; many football players, as compared to the general population, have also died or are currently suffering with a diagnosis of ALS.
At one point, they admit that "it looks like ALS, so for the public it is ALS," so it seems likely that ALS (which may be caused mostly by a genetic fault) is a different disease with similar symptoms than this ALS-like disease experienced by athletes with repeated head traumata. The article already mentions this in one place. I feel sure that the distinction between these two diseases will be made clearly, yes, for the public, who are more intelligent that some media seem to believe. It may even turn out that hereditary ALS is the same disease (that is, that all ALS patients had head traumata in their history), although that's not very likely.
An article on this newly-recognized topic is about to be published in that neurophysiology journal.[1] I imagine it can be argued that a peer-reviewed article is a reliable source for medical news. Certainly such articles are widely used on WP without complaint. Or we can wait until The National Enquirer reports on the article, granting it the officially acceptable status of secondary reference.
- ^ [http://journals.lww.com/jneuropath/Documents/TDP-43%20Proteinopathy%20and%20Motor%20Neuron%20Disease%20in%20Chronic%20Traumatic%20Encephalopathy.pdf TDP-43 Proteinopathy and Motor Neuron Disease in Chronic Traumatic Encephalopathy] (this link may be temporary).
Vandalism
One user has vandalized multiple times on this page. I reverted back to the original but he did multiple changes so can someone please just double check that it was all removed. I am still semi-new to reverting back pages when there is lots of changes. Thanks! JimmyOrangeSeed (talk) 19:30, 17 February 2011 (UTC)
- LOL! Interesting ... I just had to rollback a half-sentence deletion by an IP editor with a total of about 4 (four) edits who hadn't stopped by in like 4 (four) years! :-)
- Best regards:
- Cliff L. Knickerbocker, MS (talk) —Preceding undated comment added 23:32, 13 April 2011 (UTC).
Introductory section
I've just expanded the introductory section by giving a clinical insight about the main features and prognosis of the disease. Please contribute to it as much as possible. RaspberryKlonopin (talk) 04:24, 5 April 2011 (UTC)
Gold toilet?
Wondering where the reference to a gold toilet as a cure came from. Seems a little out there to not have a reference?? Thanks Gatorsgirl (talk) 18:13, 6 April 2011 (UTC)
- Eh? Where is there anything about a gold toilet in the article? Looie496 (talk) 19:57, 6 April 2011 (UTC)
notable cases?
Is there now a TOW policy against that? Celebs like hawking (who I believe is the longest living survivor) seem worthy of mention An in pop culture section seems appropriate too. (ip's shouldn't have to sign their posts and display their IP's so readily- I am only doing so because otherwise a bot will come in and do it for me)--68.225.194.245 (talk) 01:11, 15 June 2011 (UTC)
- You may want to check out #People affected by ALS section is getting too long?, above. TenOfAllTrades(talk) 03:38, 15 June 2011 (UTC)
Common cause of all forms of ALS discovered
This is interesting, can the information be added to the article? http://neurosciencenews.com/als-research-discovery-lou-gehrigs-disease-common-cause-found/ — Preceding unsigned comment added by 96.24.76.176 (talk) 20:26, 23 October 2011 (UTC)
- Yeah what about the finding that a malfunction in Ubiquilin 2 could be the cause of ALS? http://alsn.mda.org/news/ubiquilin-2-abnormalities-connected-als http://www.medscape.com/viewarticle/748453 there are many more sources if you need.. — Preceding unsigned comment added by Bozzat (talk • contribs) 23:23, 23 October 2011 (UTC)
- Looks like we should add that to the end of the Causes section and update comments in the pathophysiology section. - Rod57 (talk) 11:10, 6 July 2012 (UTC)
no mention of Hawking now
I noticed that there is no mention of Stephen Hawking at all in the article now. I wanted to bring this up for discussion here before adding it so that a) I wasn't being unilateral and b) that this information was added in the best possible way and in the right spot.
I went through the archives and saw the rice and fall of the list of famous people with ALS, and I think doing lists of famous people who have X is a slippery slope. I also saw the person who brought up the possibility that Stephen Hawking might not have ALS but he or she had absolutely nothing to back that up (a mention in a news section summary isn't really a good source) versus plenty of useable sources that cite him having ALS, including his books although I question whether using him for a source on a condition he has is useable. One way or another at least a one or two sentence reference to him should be added for completeness reasons since he is considered the most famous person living with the disease and the article appears incomplete without it and I would expect many readers would expect it. Cat-five - talk 03:53, 31 October 2011 (UTC)
- I agree. Looie496 (talk) 16:35, 31 October 2011 (UTC)
- I added something in the prognosis section. I would be against putting it in the header section as we'll then start adding everybody else who editors think is well known =) --PaulWicks (talk) 10:55, 2 November 2011 (UTC)
- I added a reference to back up the sentence you added. I'm sure there are better refs out there and if someone wants to replace the one I used feel free, especially if its with one that is a journal article since every other reference for the article seems to be from journals. Cat-five - talk 02:03, 3 November 2011 (UTC)
- I added something in the prognosis section. I would be against putting it in the header section as we'll then start adding everybody else who editors think is well known =) --PaulWicks (talk) 10:55, 2 November 2011 (UTC)
Olney, a pioneer in clinical research on ALS, just died. Would he be worth mentioning somewhere in this article?4meter4 (talk) 19:31, 5 February 2012 (UTC)
- Perhaps in death notices? This article describes a medical disorder, biographies of any/all researchers investigating it belong elsewhere IMHO. kashmiri 22:07, 24 May 2012 (UTC)
Self-experimentation with sodium chlorite
Not sure if this warrants a mention in the main article yet but some 24+ ALS patients are using sodium chlorite to try to improve their symptoms. (Medical Mavericks) - Rod57 (talk) 10:57, 6 July 2012 (UTC)
Tongue fasciculations
User:Yannako recently added the following sentence to "Signs and symptoms" section: "Tongue fasciculations are highly specific for ALS.[1]". As tongue fasciculations occur in other neuromuscular disorders as well (e.g., they are a fairly common symptom in spinal muscular atrophy), I temporarily removed this sentence to here so it can be discussed. Just to be clear, I am no expert in ALS but have a fair knowledge of spinal muscular atrophies; hence my reaction. Thanks to share your thoughts. kashmiri 16:49, 10 October 2012 (UTC)
- ^ [Kiernan, Vucik et al. Amyotrophic Lateral Sclerosis. Lancet 2011; 377: 942–55 Link text], additional text.
Moved: "Head injuries as a cause of ALS"
An unproportionately lengthy section titled "Head injuries as a cause of ALS" was added today by User:Eric.laporta. Its text IMHO somewhat lacks on encyclopaedic style and is poorly referenced (mainly to primary sources and newspapers, otherwise WP:OR). As such in my opinion it cannot go into the article. I am moving it here before blanking the section so that it can be worked on if anyone is interested.
- (QUOTE)
- Throughout all of medical research done for Amyotrophic Lateral Sclerosis, there has yet to be a defined cause discovered. As data shows, 90% of all ALS cases appear to be sporadic, commonly referred to as sALS, while 10% of cases are shown to be caused by familial genes, known as fALS.[1] Throughout the United States, there are about 30,000 cases of ALS at any given moment. [2] One of the hardest facts to come to terms with about ALS is the fact that most cases are random. However recent studies and inquisitions into the deaths of former athletes have shed new light on possible causes of such a terrible disease.
- Although requested, the Mayo Clinic, the clinic that originally diagnosed Gehrig with the disease, is not allowed to disclose his medical records because of institutional policy. [3]. This makes it impossible to be fully aware of the truth behind Gehrig’s illness. What many are beginning to speculate as to whether or not head injuries and head trauma sustained by Gehrig throughout his athletic career caused his ALS. [4] In recent years, a number of studies have erupted discussing the role of concussions and how they may effect diagnosing of ALS. One of the most important of these studies is one discussing the post mortem look at two National Football League players’ bodies and one boxer, particularly their brains and spinal cords. All three patients were exposed regularly to head injuries and head trauma. All three patients were diagnosed with ALS. With autopsies of their bodies, all three of them had similar brain patterns as well as toxic protein build ups, giving rise to the questions: does head injuries cause ALS? [3]
- In a June, 1934 exhibition game, Gehrig was hit by a pitch, just above the right eye and was knocked unconscious. According to news reports, he was out for five minutes. Helmets were not heavily introduced until the 1940's. He left the game, but was in the lineup the next day. [3] In addition to the most notable concussion he suffered, Gehrig also suffered a minimum of three other concussions, all of which led to a brief period of time when he was knocked unconscious. During a postgame brawl against Detroit Tigers player, [[Toy Cobb] in 1924, Gehrig threw a punch and missed falling to the ground. He hit his head on concrete, and was briefly knocked out. While playing first base against the Tigers in September 1930, Gehrig was hit in the face and knocked unconscious by a ground ball. He was also knocked out again by an oncoming runner in 1935. [3] What we know now about concussions is that they can be very dangerous. Dr. Robert Stern, associate professor of neurology at Boston University and codirector of the Alzheimer’s Disease Clinical and Research Program, stated that “if one suffers a concussion, to stop playing…until all symptoms have completely resolved. This can take days, or more often, weeks to months.” [5] Famously, Gehrig never took any time off from injuries, even head injuries which led him to be knocked unconscious. This is why he famously earned his nick name “the Iron Horse”. [3]
- In a case study based on US veterans, posted to and accepted by the Journal of the Neurological Sciences, known as GENEVA (Genes and Environmental Exposures in Veterans with ALS) looked at the possibility and statistical significance of whether or not head injuries predisposed an individual to ALS or other motor-neuron diseases. [6] What the study found was quite ground breaking. The case study found a higher associated risk of getting ALS when the individual had a least one head injury at a later stage in life, especially when the diagnosis was close to the last head injury. They found a significant association between ALS and shorter intervals between the most recent head injuries. The study concluded that head injuries obtained in later adult hood have a much higher chance of affecting the individuals risk of being diagnosed with ALS. [6] Although far from being confirmed, this type of evidence may give an understanding as to why Lou Gehrig was diagnosed with ALS.
- Many neurologists and other scientists would love to take a look at the remains of Lou Gehrig, hoping to find more answers to their questions. Unfortunately, Gehrig’s remains were cremated, so it is impossible to known for sure how great of an impact head injuries played on his diagnosis. [4] Yet, research today is directing us to more and more information. The study involving the three athletes with repeated head trauma has shed new light on the correlations between head injuries and ALS. Dr. Ann McKee, an associate professor of neurology and pathology at Boston University, and head of the study described how the disease these athletes had may not have been ALS at all, but rather a very similar degenerative motor-neuron disease that mimics ALS in similar ways. The three athletes all had copious amounts of toxic proteins in their brains and spinal cords, all of which are indicators of heavy brain trauma. [4] The protein markers were TDP-43 and Tau protein. Tau protein, although seen in some cases of ALS, is associated with cognitive decline and impairment, which is not a symptom or result of the disease. [1] The three athletes in the study showed cognitive decline and behavioral changes, despite the fact that ALS attacks the individuals ability to move and perform voluntary actions while the mind is left intact. The famed Stephen Hawking is the best example. [7]
- The findings in this study suggest a brand new theory; that the disease affecting these athletes is not ALS, but a distinctively different motor-neuron disease. Although similar to ALS, it is a distinctly different disease known as Chronic traumatic encephalopathy. In this disease known as CTE, toxic build ups of Tau protein is the tell-tale sign that the individual had this disease. [7]. This finding suggests that ALS patients who were exposed to heavy brain trauma may in fact not have ALS at all but rather the similar disease, CTE. However CTE can only be confirmed post-mortem as it requires sectioning off pieces of brain tissue. Dr. David Hovda, a traumatic brain injury expert and director of the UCLA Brain injury research center said “It is very convincing that these three individuals got this protein and they had the clinical signs and symptoms of a lower motor neuron disease. It suggests once again that for people whose career is characterized by repeated concussions over a short period of time…the likelihood of them expressing a disease that looks like ALS is increase.” [4] It is clear that there is a high correlation between repeated head trauma exposure and cognitive and motor-neuron impairment. Although undefined at the moment, repeated head trauma does cause forms of neurodegeneration. According to Mckee, studying the effects of repetitive mild brain trauma, “we can learn about the initial, early triggers of neurodegenerative disease and how to slow, reverse, and lessen them.” [7]
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