Idiopathic Progressive Polyneuropathy: How to find a specialist?

Posted by oldshep @oldshep, Feb 12, 2020

I was diagnosed about 2+ years ago. I had local testing, then a visit to Johns Hopkins. They cannot find the root cause and I continue to go downhill. Has anyone had a similar problem or does anyone know where you go after no one can diagnose and find the root cause?

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jzeitvogel | @jzeitvogel | Feb 18, 2023

In reply to @pacer3702 "A caution to avoid supplementing with vitamin B6. Excess vitamin B6 can cause neuropathy." + (show)

There is much posted online about using higher levels of b6 for dream recall as well as to help with carpal tunnel symptoms. Be careful many of the postings I've read don't mention toxicity. For dream recall they recommend 250 mg at night. I believe this exceeds the safe upper limit recommended for B6 supplementation. I learned this the hard way. Tremors and twitching ensued until I researched and realized what was going on. Be careful and do your homework before adding any supplements.

John, Volunteer Mentor | @johnbishop | Feb 18, 2023

In reply to @jzeitvogel "There is much posted online about using higher levels of b6 for dream recall as well..." + (show)

Hi @jzeitvogel, Welcome to Connect. You are right about doing your homework before adding supplements. It's also important to discuss any supplements you are taking with your doctor. There is another discussion on B6 toxicity in case you haven't seen it.
--- B-6 vitamin danger!: https://connect.mayoclinic.org/discussion/b-6-vitamin-danger/.

Are you able to share a little more about your diagnosis?

medman18 | @medman18 | Nov 29, 2023

In reply to @johnbishop "@medman18, you'll notice that we removed your email address. Connect is a public forum. We recommend..." + (show)

elained | @elained | 2 days ago

In reply to @thelman "Hello, My name is Todd. Ive been reading posts on this forum for the past 2..." + (show)

This sounds like small fiber neuropathy. A neuropathy of your entire skin. I’ve had it since 2016. I take 3600 milligrams of gabapentin a day to manage the pain. Small fiber neuropathy is sometimes called “skin on fire”. That’s exactly how it feels for me. I’m sorry you have poly neuropathy. I have progressive poly neuropathy with autonomic neuropathy in my gastrointestinal system and several other systems of my body. You have my sympathy and I’m glad you found me because I need to talk to someone who has my problems thank you, scott sincerely, Elaine.