Small Fiber Neuropathy lecture

Posted by rwinney @rwinney, Oct 27, 2019

Hello all
I have been following Dr. Anne Louise Oaklander and her research of Small Fiber Poly Neuropathy. She is from Mass General Hospital and comes with an impressive resume. I decided to post her lecture for those who may be confused by the disease or still learning and want to know more. The video is about an hour long. Googling her would be worthy as well.
Take care,
Rachel

I would like to add, for all of you idiopathic patients, that Dr. Oaklander does not believe ithere is such thing as idiopathic. I suppose it's all in the resources available to each person in their respective areas and how far they are willing to pursue (travel) for answers. She is also a Dr who is making it her mission to research and find answers and ways to help regenerate nerve growth verses masking their dysfunctional pains. An interesting aspect of her knowledge and findings involves youth. More adolescents are being diagnosed with SFN and they have not yet had chance to develop underlying causes. Dr. Oaklander focuses heavily on autoimmune deficiency in this case. She explains well and is relatable. If it were only easy to be her patient I'd be there in heart beat!

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I love this video and sent it to family members so they had a better understanding of what my son is dealing with. Dr Oaklander explains it so well and made it much easier for our extended family to understand the diagnosis. I highly recommend watching it! Thanks for sharing!

She is a wonderful doctor and person. She was gracious enough to accept my son as a patient so we are very hopeful she will be able to help him! Now if we can just find a cause for his SFN 🤞🏼🤞🏼

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@katec

I love this video and sent it to family members so they had a better understanding of what my son is dealing with. Dr Oaklander explains it so well and made it much easier for our extended family to understand the diagnosis. I highly recommend watching it! Thanks for sharing!

She is a wonderful doctor and person. She was gracious enough to accept my son as a patient so we are very hopeful she will be able to help him! Now if we can just find a cause for his SFN 🤞🏼🤞🏼

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Wait, Im so excited for this news! Was your son already a patient???

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He’s been a patient of hers since June.

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@katec

He’s been a patient of hers since June.

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Amazing.

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Thanks for the post Rachael. If only all neurologists had her knowledge of the disorder. I'm sending it to my neurologist.

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@jager5210

Thanks for the post Rachael. If only all neurologists had her knowledge of the disorder. I'm sending it to my neurologist.

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I agree totally. Glad to hear you are sharing it.

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This is an AMAZING video! Many thanks for sharing!!!

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@iceblue

This is an AMAZING video! Many thanks for sharing!!!

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You are very welcome!

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@katec

I love this video and sent it to family members so they had a better understanding of what my son is dealing with. Dr Oaklander explains it so well and made it much easier for our extended family to understand the diagnosis. I highly recommend watching it! Thanks for sharing!

She is a wonderful doctor and person. She was gracious enough to accept my son as a patient so we are very hopeful she will be able to help him! Now if we can just find a cause for his SFN 🤞🏼🤞🏼

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How did you get her to see him? I was told that she is no longer taking new patients ?

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She really isn’t seeing new patients, but since he’s an adolescent with such low values on his biopsy (and she is friends with our doctor who diagnosed him 😉) she agreed to see him. We are so grateful for her willingness to take in a difficult case like him in addition to all her research.

Liked by rwinney

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Rachel; I watched the You Tube Video you suggested. Dr Ostrander's talk was very informative. She is a great speaker. Boston is about 3 hrs drive from me. Perhaps it will be in my future, or at least I can educate myself more to present information to my Neurologist to consider further testing and/or treatment for SFPN. I have become much more symptomatic in the last few months, increased pain/tingling in upper extremities during and following sleep, autonomic symptoms of blood pressure and lower extremity pain/paresthesias. Thank You for posting this video, its a must see for everyone with neuropathy, especially small fiber peripheral neuropathy and fibromyalgia as well. David

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