1. < Neuropathy

Central neuropathy?

Posted by emme42 @emme42, Oct 12, 2023

Anyone here dealing with central neuropathy? I’m feeling kind of alone and would definitely love to hear ideas from people about what helps, because I’m realizing that treating it can be very different than peripheral neuropathy. I'm also happy to share anything I've learned or tried.

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Mentor
John, Volunteer Mentor | @johnbishop | Oct 12, 2023

Hi @emme42, Thanks for starting this discussion. I have idiopathic small fiber peripheral neuropathy but am not familiar with central neuropathy. If I'm not mistaken, central neuropathy involves the central nervous system and sounds similar to Central Sensitization Syndrome (CSS). You mentioned in an earlier post that you have been diagnosed with Diabetes Insipidus for over 20 years. I did find a reference to a 2016 article that may be related to your symptoms.
--- New findings point to central nervous system role in painful diabetic peripheral nerve disease: https://medicalxpress.com/news/2016-01-central-nervous-role-painful-diabetic.html.

While we wait for members who are dealing with central neuropathy to share their experience, I thought you might want to take a look at the following discussion started by @rwinney to see if it might be helpful:
--- Central Sensitization - please share your stories: https://connect.mayoclinic.org/discussion/central-sensitization-please-share-your-stories/.

Do you mind sharing what you have learned or tried?

REPLY
matthewbgilmore | @matthewbgilmore | Oct 12, 2023

Yes I am... or a least central pain syndrome. Pain, spasticity--not much help from doctors except gabapentin. And tizanidine. Plus some rolled eyes.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Oct 13, 2023
In reply to @matthewbgilmore "Yes I am... or a least central pain syndrome. Pain, spasticity--not much help from doctors except..." + (show)
@matthewbgilmore

Yes I am... or a least central pain syndrome. Pain, spasticity--not much help from doctors except gabapentin. And tizanidine. Plus some rolled eyes.

Jump to this post

Welcome @matthewbgilmore, I'm glad to see that you have connected with @emme42. @rwinney shared this video presentation by Dr. Sletten on CSS in the discussion linked in my previous post above that I thought might be helpful:

@emme42 and @matthewbgilmore have you thought about seeking help at a pain rehab center?

REPLY
matthewbgilmore | @matthewbgilmore | Oct 13, 2023

There seem to be precious few pain rehab centers in DC & area. I've done rehab immediately post-stroke--pain wasn't really an issue then. The progression to this serious syndrome has just been recent. Doctors have been unhelpful/perplexed/scared.

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sma2day | @sma2day | Oct 14, 2023

Have you watched Doctor Howard Schubiner? You tube… he is an MD from Michigan and another member of this group posted his name - watch it! This could be helpful as it makes sense what he is saying!

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irishnanny3 | @irishnanny3 | Dec 9, 2023

My neurologist told me my central pain syndrome that emerged six weeks after my ischemic stroke happens to about ten per cent of patients who suffer stroke in thalamic region of the brain and multiple treatments we tried have been to no avail. He continues to research, as do I

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