1. < Neuropathy

Is stem cell regeneration an option for my husband?

Posted by anita0524 @anita0524, Mar 16 4:19pm

Looking at and researching stem cell regeneration-Inherited genetic tendency for brachial plexus neuropathy-my husband has large percentage of family members that have had “episodes” where the nerve sheath has been damaged. Research was done. It’s found in a few large families across the country. The location of genetic mutation was found. That was the end of the research. Currently, he is having another episode. Pain and numbness down his arm into his hand. Probably sheath was injured from working out-which he does to keep muscular tone to prevent nerve injury! Permanent damage to left arm from previous episode. Now episode is in right arm. Anyone have feedback on stem cell regeneration for peripheral neuropathy? Much of papers I’ve read are from a few years back.

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crossette | @crossette | 2 days ago

OH, I had the article title in QUOTES and it did not accept that. Now I will try the link:
https://doi.org/10.1038/s41467-020-17243-z

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crossette | @crossette | 2 days ago

It works! So do not EVER use quotes on this forum, I guess.

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anita0524 | @anita0524 | 2 days ago
In reply to @crossette "@anita0524 I just attempted to send the file name withouot the link and it did not..." + (show)
@crossette

@anita0524 I just attempted to send the file name withouot the link and it did not go through again. Strange!
I was hopeful that someone who monitors this forum would get it repaired. Something is stopping it.
Try Googling the title EEF1A1 deacetylation enables transcriptional activation of remyelination.
The mentions of theophyline are on page 5 bottom left and page 9.

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Thank you. I was able to open now. Will read through. Very discouraged at this point. Trouble finding a solution to getting care from neurologist that knows what they are looking at. The wait looks like going to be maybe even 4-8 months. In meantime, losing function is horrible. I’ve had to help with some basic functions and it’s getting worse. Pain is quite bad. Got a tens machine, and GP gave him tramadol rx for pain that didn’t do much if any, except give him sweats off and on. Even in acute situation, the only instruction from appointment line at Johns Hopkins that makes any sense now is to go to ER and then neurologist would be brought in to consult. Contemplating flying out to Minnesota Mayo to go to ER? Does that sound crazy?

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crossette | @crossette | 2 days ago

I am also having a problem with doctors who are so afraid to prescribe something off-label. I show them a study like the one I sent you, and they still will not even TRY to help me by trying a drug for a just few weeks to see if it helps. In your husbands case I would go doctor shopping until you find a progressive doctor who will prescribe theophyline. This is a substance that is made in everyone's body after drinking any caffine! It has very small risk of side effects. Look it up on Drug.com.

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