Talk:Parsonage–Turner syndrome

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This article on Parsonage-Turner syndrome (PTS) has few champions, rather thin and lacking references (c.f. similar disease: Guillian-Barré syndrome).

Strangely, that which is published on the web so far is dramatically lacking in detail (like this article), often plagiarized from one site to another (thus furthering the spread of misinformation), contradictory (common/rare disease) and rather confused...many synonyms for the same thing, and genetic vs. "one off" cases. It is not clear that even neurologists (in general) are up to speed on this...If we are to believe what has been written, Guillian-Barré syndrome is rarer yet much more has been published on it.

The published incidence rate for PTS is given by Beghi et al., 1985 for Rochester, Minnesota for an 11 year period. This number has been adopted by Kolev (2004, see OrphaNet). Is seems a wee bit unscientific and unfounded. Rochester had a population of 85000-ish in 2007, so even being conservative: keeping the same number from 2007 for 1985 and using a hospital catchment of 2X the population of the city, that would make a total of 1,870,000 person years, within which the authors identified between 6 to 11 cases to crunch their number: 1.64 in 100,000. I do not have their research paper, so I am not able to give detailed numbers...I am not a neurologist, so I am not the expert. BUT: misdiagnoses aside, this is far too specific a geographical location (lots of Scandinavian-Americans?) to suggest that this is an accurate incidence rate for PTS.

Does anybody have any reliable information on this disease? Who is researching this?

Does anybody out there have an idea of WHO is on top of this one? And more pertinently, can anybody write a good article for Wikipedia about PTS?

Another resource can be found at http://emedicine.medscape.com/article/315811-overview —Preceding unsigned comment added by 71.206.250.232 (talk) 02:56, 4 November 2010 (UTC) now that Hiesman trophy winner Danny Wuerffel has GB we may see some stepped up research I hope. I have been suffering from PT syndrome for nearly 2 years myself. — Preceding unsigned comment added by 74.93.174.249 (talk) 17:17, 16 June 2011 (UTC)