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?

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

Hi...I saw my neurologist and he will set up time for me to have a discussion with Dr Oaklander. He still does not think IVIG is right for me. He seems to have concerns about side effects. It has risks and does not always work so it is important to make sure it is appropriate for each person. Based on my "patchy distribution" of pain from face to toes he believes mine is a ganglionopathy and I will have pain every day for the rest of life. Not easy to take. He is testing (again) my ANA and also looking into hereditary causes, sodium channels. Two of his patients have hereditary causes and were put on sodium channel blockers reducing their pain from 8 to 2 on a scale of 1-10. On another post I mentioned my elevated B6 from a vitamin B Complex. He was not overly concerned about the level. Said I "dodged a bullet" by stopping it when I did but he is retesting the B6 level as well. That's it for now. Rainy and raw here in NH....not my kind of weather!

Thank you. This was very informative, more than anything else. I think I will contact her and see if she will see me. If I can arrange plans to travel from abroad, I will. I would like to see her and have her attempt to pin down the etiology of my SFN.

Besides all the valuable information it made me ecstatic to hear Dr Oaklander say the cause of disease in each person needs to be known. After listening to the full video I must say she is my idea of a great doctor and Mass Gen sounds pretty great to me as well. I am going to print out the list of blood tests recommended from the site and cross reference to figure out which ones I still need to do. Thank you!

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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