1. < Neuropathy

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?

Interested in more discussions like this? Go to the Neuropathy Support Group.

aaron_az | @aaroncush | Jan 30, 2023
In reply to @total99 "What is the exact definition of idiopathic neuropat" + (show)
@total99

What is the exact definition of idiopathic neuropat

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Technically it means of uknown origin. Dr. Anne Oaklander called it lazy doctors: https://youtu.be/s66LvWQ5Qso

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rick60626 | @rick60626 | Jan 30, 2023
In reply to @total99 "What is the exact definition of idiopathic neuropat" + (show)
@total99

What is the exact definition of idiopathic neuropat

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"Idiopathic" in medicine basically means caused for unknown reasons, or atypical. From my experience it's how they describe neuropathy once they've eliminated the standard, typical causes: diabetes, cancer treatment, etc.

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mitchsfm | @mitchsfm | Jan 30, 2023
In reply to @total99 "What is the exact definition of idiopathic neuropat" + (show)
@total99

What is the exact definition of idiopathic neuropat

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It means that any idiot can diagnose it!

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tony24 | @tony24 | Jan 30, 2023

I'm not sure to be honest. I'm kind of in the same camp. I'm considering trying Natropathic doctors and go from there. Sorry I couldn't be very helpful. Hang in there.

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berniep | @berniep | Jan 31, 2023

Mine is likely due to vitamin B-6 toxicity since I was taking a Solar multi vitamin with 75mg of B-6 daily. After I stopped taking it, my B-6 levels decreased dramatically. However, I still am suffering with bilateral neuropathy.

I went to Dr. Thomas Brannigan at Columbia in New York. He's the had of the neurology and neuropathy department there. I highly recommend him.

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pamelaz | @pamelaz | Feb 1, 2023

I’m in Texas any doctors close to Dallas?

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1 reply
aaron_az | @aaroncush | Feb 1, 2023
In reply to @pamelaz "I’m in Texas any doctors close to Dallas?" + (show)
@pamelaz

I’m in Texas any doctors close to Dallas?

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NeuropathyCommons.org, setup by Dr. Anne Oaklander, only shows Austin and Houston: https://neuropathycommons.org/experts-directory/us?field_age_group_target_id%5B139%5D=139&field_state_target_id%5B336%5D=336

Better than what it showed for AZ. I am sure there are other options out there, just don’t know a good way to find them. Good luck!

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medman18 | @medman18 | Feb 1, 2023
In reply to @phoenix29412 "Hi. How are you doing? I think your post was from 2020 and I hope you..." + (show)
@phoenix29412

Hi. How are you doing? I think your post was from 2020 and I hope you have found answers and relief. Please let me know.
My experience so far:
My neuro symptoms started August 10 2022. Left side of face numb (ear lobe first and it felt novocained ) and progressed up and down left side as tingling and numbness and then heaviness. Now it has moved to entire head and spreading on the right side. I have some pain.
Saw a PA on Aug 18 and she ordered tests - I can't get an MRI due to metal in my body but she ordered a head cat scan and a nerve conduction test. Both were negative (good news) with one nerve borderline. Nerve Conduction was ordered on Aug 18 and scheduled for mid January 2023 (seriously?) but was eventually moved up to November 18 2022.
Neck xray showed possible problem but would not explain more than face.
I want a cat scan with contrast that will show the nerves. Ortho said to wait until nerve testing and what neuro says. I see an NP on February 9th.
The doctors and testing services are super backed up at my teaching hospital in SC. I called Mayo - got a phone interview and had that ray of hope extinguished when they said no to seeing me and no to being put on a waiting list.
Praying that you got some answers and some treatment.

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I too have the same illness. I really felt bad after reading your posting. I sure wish I could offer you a "fix" for your IPN. I can only wish you the best of luck and your doctors will find a cure for your problem.

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Mentor
John, Volunteer Mentor | @johnbishop | Feb 1, 2023
In reply to @medman18 "I too have the same illness. I really felt bad after reading your posting. I sure..." + (show)
@medman18

I too have the same illness. I really felt bad after reading your posting. I sure wish I could offer you a "fix" for your IPN. I can only wish you the best of luck and your doctors will find a cure for your problem.

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@medman18, you'll notice that we removed your email address. Connect is a public forum. We recommend sharing personal contact information using the secure private message function.

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rubethedogman | @rubethedogman | Feb 2, 2023

I guess is that you were poisoned by cipro, avelox, or levaquin. I was and can tell you that no doctors know how to make the diagnosis. I also went to John Hopkins. In addition, I went to Mayo clinic, and University of Michigan medical center. Not one doctor could make a diagnosis. Neuropathy is a very common symptom of fluoroquinolone toxicity

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