Living with Neuropathy - Welcome to the group

Hello Don @dwb111060 -- Welcome to Connect. I have idiopathic small fiber peripheral neuropathy and have not tried the Rebuilder product but I have tried a Zopec DT 1200 which also purported to help neuropathy but after about 6 weeks of using is 30 minutes twice a day I found no real help. I can say that maybe one or two days my feet felt a little better but that could have been something other than the device. I only have the numbness with my PN so others may have different experiences. I can tell you there a lot of people with neuropathy and a lot of companies selling stuff that may or may not help you so you have to do your own research. Here is an article I found about the device from 2008 on the ScienceBasedMedicine.org website.

Recognizing Dubious Health Devices
-- https://sciencebasedmedicine.org/recognizing-dubious-health-devices/

Here are some other sources for evaluating a treatment or device.

Quazar's guidance about avoiding scams and snake oil cures
-- https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/

FDA's HEALTH FRAUD PAGE
-- https://www.fda.gov/ForConsumers/ProtectYourself/HealthFraud/ucm539101.htm

NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
-- https://nccih.nih.gov/health/decisions

John

Hi All,
I too, am dealing with idiopathic small fiber neuropathy/autonomic neuropathy and was diagnosed after 4 years of doctors and specialists who could not fit the pieces together. BIG shout-out to Caitlin Castellot, NP, who pointed me in the right direction, and to Peter Novak, MD, PhD, for the right testing and the definitive diagnosis. And thank you to the curators and contributors of this forum who help to put this "new normal" into perspective.

My question is - Has anyone here had success applying for Social Security Disability?

Yes. Need support of neurologist, internist and for me a psychologist.

Hello @elizabej -- Welcome to Connect. I posted this information in another post for a member but I haven't heard if they were able to file for disability.

Foundation for Peripheral Neuropathy – Getting Help for Peripheral Neuropathy Social Security Benefits
-- https://www.foundationforpn.org/2016/05/08/5217/

SSI Resource Center – Facts about Peripheral Neuropathy and Filing for Disability
-- http://www.ssdrc.com/ssd-peripheral-neuropathy.html

DisabilitySecrets.com – Getting Social Security Disability for Peripheral Neuropathy
-- https://www.disabilitysecrets.com/social-security-disability-neuropathy.html

@elizabej have your doctors suggested anything for treatment? I'm tagging @darlia since she originally asked the same question in an earlier post. @darlia were you able to file for SSA disability?

John

Thank you @johnbishop for the resources and prompt reply!
It was explained to me that because the cause is unknown, the suggested treatments focus on alleviating the symptoms:
- Pyridostigmine (Mestonin) - for muscle weakness
- coffee and/or ibuprofen before meals - to counteract postprandial hypotension
- Midodrine - to counteract low BP
- Low-dose aspirin - to counteract blue fingertips
- Physical therapy & acupuncture
- Propranolol - to lower high BP
- Gabapentin - pain management
Most of these have been discontinued but I'm still on a low dose of Gabapentin, aspirin, and physical therapy. I sit when the BP is low, & stand when the BP is high. Small low-carb meals. Trying to mitigate some of the autonomic dysfunction too.

I AM TRYING TO UNSUBSCRIBE FROM THE MAYO BLOGS AS I HAVE A PROBLEM WITH SO MUCH MAIL COMING IN . PLEASE HELP ME TO DISCONNECT....I AM 86 AND TOO OLD TO KEEP UP WITH ALL THE MAIL....THANK YOU. ALLEGRO

Contact your local Legal Services or Legal Aid office and the closest law school community clinic.

Hi @allegro, just go to the bottom of the email notification you see when you read this message and click the link that says Unsubscribe from this thread. That will stop all of the email notifications from this discussion.

John

That does not do it. so don't tell me to go to the bottom of the page.

@tusconguy -- the bottom of the page of the email message/notification you received has an unsubscribe link on it. Or you can go to your profile and select Account Settings, scroll to the bottom to Email Notifications and select Edit to unsubscribe to all notifications.

Hope this helps.
John