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Wed, Oct 23 7:11pm · Living with Neuropathy - Welcome to the group in Neuropathy

@kiro0001 It sound like you're dealing with small fiber neuropathy (SFN), and neurologists are as much in the dark as we are when it comes to treating SFN. Keep in touch with this group, educate yourself, and try for yourself options that have worked for others to relieve the pain.

Tue, Oct 22 4:42pm · Living with Neuropathy - Welcome to the group in Neuropathy

@johnbishop Thanks, John, I'll try calling the Rochester Office of Patient Experience. I've been a patient at Mayo for several years, and had absolutely wonderful experiences when I had two total shoulder replacements, so this bad experience came as a shock. I'll let you know if the OPE provides any help.

Tue, Oct 22 3:24pm · Living with Neuropathy - Welcome to the group in Neuropathy

@colleenyoung I'm disappointed in the Mayo Clinic!! I've had a truly discouraging situation with the Spine Center and Neurology. Despite my messages and telephone calls, it's taken the Spine Center almost a year to respond to a neurologist bouncing an issue back to them for "next steps" and then only through a department secretary telling me over the phone that the Spine Center doctors did not agree with the neurologist's suggestions. Certainly not the kind of care/service one expects from the Mayo Clinic!! To whom can I direct my complaint?

Tue, Oct 8 2:11pm · Small Fiber Neuropathy? in Neuropathy

@iceblue @artscaping Since 2016 when my problems with SFN began, I've taken various doses of Gabapentin, at one time as high as 2,700 mg/day. I've never found that it provided any pain relief, but it impacted the brain and made me stupid, a side effect that I found unacceptable. However, taking 800 mg of Gabapentin in the evening does help me sleep. So, iceblue,experiment and find what works for you.

Sun, Oct 6 9:38pm · Small Fiber Neuropathy? in Neuropathy

For those willing to wade through a medical article, here's one published in the latest edition of the Journal of the American Medical Association Neurology. https://neuropathycommons.org/sites/default/files/Oaklander_Nolano_SFN_2019.pdf It's a long article, but you may want to download it or print it to share with your doctor.

Sun, Oct 6 9:12pm · Small Fiber Neuropathy? in Neuropathy

@albiet Did you ask if there is another doctor affiliated with Dr. Oaklander to whom they could refer you for an appointment concerning SFN?

Sun, Oct 6 9:03pm · Small Fiber Neuropathy? in Neuropathy

@rwinney Interesting that Dr. Glenn Lopate is listed as one of the authors of the book you found so helpful. I had an appointment last year with Dr. Lopate in St. Louis, Missouri, and found it a total waste of time and money. He most certainly is not terribly knowledgeable about SFN.