Connect
Is stem cell regeneration an option for my husband?
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Neuropathy Support Group.
Connect
I feel certain that your husband can get stem cell therapy. Not sure if insurance will pay for it.
You might want to check out https://connect.mayoclinic.org/comment/628627/. Jennifer hunter on thoracic outlet syndrome.
I had a brachial branch block which relieved similar symptoms.
-
Like -
Helpful -
Hug
1 Reaction@anita0524 If you are referring to the disorder known as hereditary brachial plexus neurotic, there is a clinic dedicated to this rare disorder at the University of California San Francisco Calle the Brahial Neuritis Center. Have you tried looking their website for information?
There is also a brachial plexus network at the National Organization from Rare Disorders:
https://rarediseases.org/organizations/united-brachial-plexus-network/
As to stem cell treatment, this must be highly individualized to the person and disorder, so any search for a Practitioner should start with one of these organizations.
Other "Stem Cell Clinics" not affiliated with a research organization are literally taking a very expensive "shot in the dark" at this point in the development of emerging therapy. Those promoting embryonic stem cells have been issued warnings or cease and desist orders by the FDA. To date the FDA has approved specific stem cell therapies for about 80 conditions, but I didn't see any neuropathy conditions listed (yet).
Does your husband's inherited disorder have a specific name you can research?
-
Like -
Helpful -
Hug
3 ReactionsThere is a common, older asthma drug called Theophyline that has been found to help regrow Myelin which is the material that nerve sheath is made of. You might ask your doctor to prescribe a few weeks worth of pills and see if it helps. I have a link to the study if you need it.
-
Like -
Helpful -
Hug
2 ReactionsWow. I am a retired nurse and I hadn't Theophylline for years. An old drug might find new life all these years later.
I had not heard of this rare disease organization! I knew there was research being done in WA on my husbands family, and a few other families in this country. I had not heard of any further study after the research doctor retired. Thank you so much! I will look into this.
Trying to do a lot of research, so if you could send me the link, that would be amazing! Thank you so much. Husband has very bad emotions about asthma medications-mother and brother passed from bad asthma(other side of the family not genetic nerve issue)
I have tried to reply 3 times to this inquiry today and each time the
submission just hangs with the spinning wheel icon. It never completes
sending.
Please fix this and let me know when it is fixed.
Deane
.
View Translation
crosette, it must be fixed. I can read the request and am waiting for the link along with anita.
@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.