NeuroTalk Support Groups - Neuropathy does improve

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - Neuropathy does improve (https://www.neurotalk.org/peripheral-neuropathy/43699-neuropathy-improve.html)

Acetyl L Carnitine

Thank you so much for this information and congratulations on your amazing progress!

How are you now? Curious what you did to get better?

Quote:

Originally Posted by flsun01 (Post 260382)

...relentlessly progressive , irreversable once established ,thats just a sampling of the prognosis of neuropathy found on most sites and unfortunantly in the mind of much of the medical profession. Little wonder that most newcomers to this forum are so traumatized by their symptoms and diagnosis. Thank goodness for the positive reporting from others on this site such as Wings and Liza. Yesterday marked my one year anniversary of this wretched disorder and I am much better. My pain has all but disappeared and my balance improved, for this I am delighted. I follow Mrs Ds regimen suggestion in the stickies faithfully. Does it help? I can only assume so , but I sure didnt get any suggestions from the Docs. And for the sake of any newcomers to this site looking for a glimmer of hope or a bit of advice concerning strange symptoms ,I shall list the following..piercing, crushing, unseen insects crawling, searing burning ,electrical shocks ,invisible rain drops , pins and needles and all around feeling lousy! So no ,you are not crazy ,and you can get better! Thanks to all....Tom

Hi Tom - I am freshly diagnosed, male in my late 30's and have had the precise symptoms you mentioned. The invisible raindrops is immediately what comes to mind when I am walking to /from work. I literally look up at the sky. and allt he other stuff. Love to know how you are doing now and how you found your way to the recovery. I am new to the forum so not sure how to find Mrs D's stickies. Congratulations and I hope you are still well.

Hi franklin76
Welcome to Neurotalk. Glad you found this thread - it's a good one and your bumping it up to the top will help others see it. Re finding MrsD's stickies - stickies are threads that are stuck to the top of a forum page. Go to any of the forum topics and you will see at the top of most lists a number of threads that are designated 'stickies'. MrsD has several throughout neurotalk. The one you're probably looking for is at the top of the Peripheral Neuropathy forum.To get there click on NT Support Groups (top left of page) then go down to Health Conditions and find the Peripheral Neuropathy forum - click - the stickies should be at the top.

I hope you find some answers to your questions. There are plenty of friendly folk here to help out - just ask away. Note that some of the postings can be quite old and you may not always get a response to direct questions to older posters.
All the best.

I found it - you can ignore my old reply. Thanks!

I want to encourage people that one of the keys to improving is correcting the cause. Idiopathic neuropathy does not exist; it is simply undiagnosed.

It was 15 years before I found myself accidentally in the hands of a Lyme Literate MD who diagnosed my Lyme. Treatment "reverse aged" me to a person I no longer recognized, as I'd become so identified with my symptoms.

But the entire neuropathy has not reversed, and another smart MD looked for something no one else had: mold toxin. I tested positive for two neuro-toxins. Then I had my home inspected. Both molds are living in my house. One is obvious, once you know to look under your sink on the wall. The other is behind drywall, which makes excellent fodder for mold.

So now I face detoxing from the mold and remediating my home. I expect it to cost way more than I'd want to spend, but I also expect my health will make more gains.

Don't stop looking!

Feed your mitochondria, because they are the powerhouses of detoxing and feeding our long nerves.

Liza Jane

Quote:

Originally Posted by LizaJane (Post 1150996)

Interesting. So how did you test yourself for mold? Specific blood tests? They found my copper levels to be low 60 vs 70-160 and ceruoplasm the same so that is the latest thinking as they said it was very rare for someone of my age to have this be below normal as body needs very little copper intake to maintain these levels (better question is why am I not absorbing the copper?). Will see if this helps with the reversal. I will keep people posted. I was wondering a bit about mold but the 4 other members living in the apt with me have no symptoms. The bathrooms literally have brown stained mold on the marble underneath the toilets and around the shower walls and in general the apartment and bathrooms don't vent well. I am doubtful but I guess it could be worth a check. Thanks for the tip. Have you heard anything else on copper deficiency on this forum?

Quote:

Originally Posted by Nervous (Post 881367)

I have a list of symptoms and of supplements. I'll have to get back to you on all that. But I appreciate your concern.

Things may get better for me. Or they may stay the same. But I am past the panic and fear over the fact that they might get worse. My affairs are in order, so I can take what comes, one step at a time.

This forum, particularly mrsD, have been a great help. I am easily discouraged by doctors — who, as everyone here knows, are inadequate — but NeuroTalk has been a substantive help and I am grateful.

Cheers. :)

Yes, I feel the same somewhat. I can still get into a panic mode on occasion when things are flaring but overall I'm letting go of the fears associated with it. I'm 62 and I'm heading out the door anyway. My affairs are in good order and everything is in place in the event of my demise.

There is a phrase from the movie Croupier, which btw is one of my top 10 favorite movies. Hang on tightly, let go lightly.

I will fight like mad to cure myself or find a way to have a life in spite of what is happening. But if in my heart I truly feel I don't want to do it anymore or suffer it then I give myself permission to intervene in my own behalf. This IMO is honorable and good. Anyone who really loves me will support me in this. I can think of no greater loss than the loss of one's memories of the good times, to unremitting pain. I watched it happen with my mother.

Hi there, Franklin:

This is the B12 stickie:
http://neurotalk.psychcentral.com/thread85103.html

And this is the subforum where most of the informational posts are:
http://neurotalk.psychcentral.com/forum119.html

Don't forget the "search" feature. You can search any term 4 letters long or more on it to find posts on the PN forum.
The search field is on the upper right of the first page of the PN forum.

Old posting, but good info to bring up and especially for the new people. Improvement can and does happen.

Quote:

Originally Posted by Steve (Post 370561)

Just came back here on a whim. Remember me? My nick on the old board was SteveInTrouble.

Burning flesh, couldn't wear clothes, radiating nerve pain, yadda yadda. Dx of small-fiber neuropathy.

All gone. It was a huge amount of work. And expense. But most days I don't even remember I had it.

I credit the info I found here, and on the TOS forum. Thanks all--and good luck!

Steve, i read you on another site asking is this can be anxiety. So do you have a diagnostic of small fiber?? and how you cure that? thanks