MMN
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November 24, 2014 at 1:18 pm
Hi, can I find any people with MMN on this forum? While CIDP is similar, it is still a different disease. The forum search seems not to work. Cheers, Anna
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November 25, 2014 at 7:08 pm
It is a tragedy the search function stopped working when the Foundation made some “improvements” last month. Hopefully they will restore the function soon.
In the meantime, did you find this publication? http://30g7el1b4b1n28kgpr414nuu.wpengine.netdna-cdn.com/wp-content/uploads/2013/09/MultifocalMotorNeuropathy.pdf
Scroll to page 4 in this newsletter: http://30g7el1b4b1n28kgpr414nuu.wpengine.netdna-cdn.com/wp-content/uploads/2013/12/Winter-Newsletter-2013.pdf
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November 26, 2014 at 9:55 am
Thanks. Yes I know this publication; just reading it again, and it is enough to make me dispaire, cause I went undiagnosed for 8 years with no treatment whasoever, huge damage has been done, possibly irreversible, and I am being denied the treatment now. !!!
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November 26, 2014 at 1:06 pm
In the newsletter you state you have multiple international branches. I need contact details in both Germany and Greece, if available, please.
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November 26, 2014 at 4:05 pm
International chapters and contact info can be found here:
http://www.gbs-cidp.org/wp-content/uploads/2013/10/GBS-Directory0613.pdfHere are some specialists in Greece that may be able to help or provide referrals:
http://www.neurology.org/cgi/content/meeting_abstract/78/1_MeetingAbstracts/P05.159I hope you find the support you need.
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November 26, 2014 at 4:46 pm
University of Athens. Well I was in their hospital, but did not get the help I need. I might have contributed to their research though, with my rare illness.
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