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.

I watched this video a while back and found it to be by far the MOST informative on SFN. She seems to be the most knowledgeable doctor for this disease. Was she able to find your cause?

Thank you sharing the video. I too am a patient at Mass General and only there were they able to figure out I had SFPN.



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Were they able to determine the cause?

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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But leaning toward post infectious or GBS. I don't think they know enough about this disease yet to pinpoint a cause but it helps to know they are working on it. At least that's my sense. I do not see Dr. Oaklander but a doctor on her staff. He does not think I need/am ready for IVIG. I see him on Monday so I will update you if I learn anything new.

Wow I am half way through this video right now and I am so IMPRESSED by their normative data for skin biopsy - these are the facts I wanted to be considered when I had my first biopsy at age 19 and they didn't even consider my age when looking at the numbers....with my repeat (now 22) I would love to have it sent to MGH. Also she seems like an awesome doc - wish I lived in Massachusetts! Also this is the first info that provided "rapid heartbeat" specifically as a symptoms of SFN AND discussed "early onset". Man I wish I could see this doctor! Thanks for sharing

A direct link to make it easier for others; https://www.youtube.com/watch?v=guS6PATRh7E

Thanks for the link of the lecture!
You are lucky to be a patient there.

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.