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Old 05-18-2016, 08:44 PM #1
SylvieM SylvieM is offline
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Quote:
Originally Posted by hbielski1905 View Post
So, it seems this goes back to 1998. We don't know the exact cause yet but at that time I was still serving in the Air Force. I'm currently working with both Mass General and the VA to see what we can figure out.

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We're you in the Mideast? It might have been too recent for the video, but I read that the great majority of veterans with Gulf War Disease have a gene that made their prophylactic "vaccines" for nerve gas...Mestosin (forgot the generic name)...neurotoxic...causing GWD and....neuropathy! I'll try to find the article.
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Old 04-29-2016, 01:11 PM #2
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Originally Posted by Summerfun View Post
Hi...I am patient at Mass General with idiopathic NLD SFN. For those interested in this disease there is a video by Dr. Anne Louise Oaklander posted on the MGH neuropathycommons.org website. It is under "For Patients and Physicians", "Video Lectures", "A Name for the Pain". It is very informative and comforting to know that someone "gets it". Let me know if you have trouble finding it.
A direct link to make it easier for others; https://www.youtube.com/watch?v=guS6PATRh7E
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"Thanks for this!" says:
bluesfan (04-30-2016), Lukesmom (05-02-2016), mrsD (05-01-2016), Protector (05-01-2016), stillHoping (04-29-2016)
Old 04-29-2016, 05:39 PM #3
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Quote:
Originally Posted by Summerfun View Post
Hi...I am patient at Mass General with idiopathic NLD SFN. For those interested in this disease there is a video by Dr. Anne Louise Oaklander posted on the MGH neuropathycommons.org website. It is under "For Patients and Physicians", "Video Lectures", "A Name for the Pain". It is very informative and comforting to know that someone "gets it". Let me know if you have trouble finding it.
Thanks for the link of the lecture!
You are lucky to be a patient there.
Last edited by stillHoping; 04-29-2016 at 06:04 PM.
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Old 05-01-2016, 10:06 AM #4
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Thanks for sharing this video. It's encouraging to see more doctors focus on this complex disease. I also found the MGH neuropathy website very helpful as a screening guide. It lists all the blood tests they use as well as other helpful resources. I've added it to my large and growing list of bookmarks for SFN.
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