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Small Fiber Neuropathy lecture

Posted by Rachel, Volunteer Mentor @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

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katec | @katec | Oct 31, 2019

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.

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phoenix0509 | @phoenix0509 | Jan 15, 2020

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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artemis1886 | @artemis1886 | Sep 24 7:36pm
In reply to @rwinney "I would like to add, for all of you idiopathic patients, that Dr. Oaklander does not..." + (show)
Profile picture for Rachel, Volunteer Mentor @rwinney

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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@rwinney It is easy! I travelled from Texas to Boston to see her. I received a lot of help. She also practices and licensed in three other states. I learned from Dr Oaklander herself. She is amazing! Mine is autoimmune. I have lupus, sojourns, mixed connective tissue disease, hashimotos. She believes I got SFN and severe axonal sensorimotor dysautonomia peripheral polyneuropathy from mrsa bacterial spinal meningitis in 2002. She helped me get on panzyga IVIG and it helped turn my life around. I saw her about a year and half ago. I still see her occasionally. I was on IVIG from age 7-18. Dr Oaklander told me if I would have stayed on it I wouldn’t be in the shape I am in now. My nerve conduction last time checked was 1.1.Normal nerve conduction 7.5.

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