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14:14:25 From Glenn Ribotsky to Everyone:
WNA is also holding a webinar on February 22 on acupuncture for neuropathy–registration for that should open on Monday. (We’re trying to solidify 4th Thursdays each month for Webinars.)

14:26:16 From Glenn Ribotsky to Everyone:
John seems to have a radiculopathy (“radic”=root, and he seems to have nerve root impingment in the lower spine). Radiculopathies are the most common compressive neuropathy outside of carpal tunnel.

14:27:38 From Peripheral Neuropathy Support Network to Everyone:
R, I am taking a food supplement called META-NX. It has all but arrested my neuropathy pain. It is doctor-prescribed and doesn’t work for everyone.

14:28:50 From Glenn Ribotsky to Everyone:
META-NX is composed of methylated cobalamin (Vitamin B12), pyridoxine (B6) and methylated folate.

14:34:01 From Glenn Ribotsky to Everyone:
This is why I order my supplements from Swanson–originally a Canadian company; they seem to be much stricter about supplement oversight there.

14:40:05 From Peripheral Neuropathy Support Network to Everyone:
B12 module molecule. This may be a factor in absorption. May work for some and not for others.

14:40:35 From Peripheral Neuropathy Support Network to Everyone:
The key phase is “methylated folates.”

14:40:42 From Rebecca Hotop to Everyone:
I took MetaNX for a while and starting feeling really great. Then after about a month or so, I started feeling really funky so went off it. I think it’s high in B6 so we have to be careful with that.

14:41:04 From HG to Everyone:
I don’t like the B6 in the Meta-Nx since B6 is a cause of Peripheral Neuropathy.

14:43:13 From Glenn Ribotsky to Everyone:
Ah, but the cases of B6 overdose neuropathy out there seem to be related to that MTHFR mutation. Those who can’t methylate pyridoxine B6 to the active pyridoxal-5-phosphate form can build up B6 to dangerous levels–even if they’re not supplementing at high levels. To my knowledge, no one taking a methylated form of B6 had experienced B6 toxicity.

14:44:21 From Peripheral Neuropathy Support Network to Everyone:
I get my META-NX from an online pharmacy. The doctor will help provide a source.

14:45:39 From MW to Everyone:
My started with numbness…Then burning, then pain…

14:46:09 From Glenn Ribotsky to Everyone:
It often depends on specifically which class of nerve fibers are being preferentially affected.

14:57:34 From MW to Everyone:
@Glenn Ribotsky I need to make an appointment with you!🤔😜

15:02:43 From Glenn Ribotsky to Everyone:
Just don’t die at 60 from falling over. Then the eulogies won’t be as forgiving. 🙂

15:10:12 From Peripheral Neuropathy Support Network to Everyone:
Full scope CBD

Pain Master

15:15:46 From Pat Gualtieri to Everyone:
thepainmaster.com for Monica’s tropical cream

PainMaster: 703-269-0810
Sold in the Burke store or available via mail-order.

15:19:38 From MW to Everyone:
@Pat, I have called their customer service and they have been amazing.

15:36:01 From MW to Peripheral Neuropathy Support Network(Direct Message):
Thank you MJ for asking that question, nerve regrowth!

15:37:04 From Peripheral Neuropathy Support Network to MW (Direct Message):
Win-San-Stor

WinSanTor.com   Pharmaceutical investigating drug to speed up nerve regeneration

15:47:29 From Glenn Ribotsky to Everyone:
And, some types of neuropathies do have therapies–particularly autoimmune and nutritional ones.

15:49:34 From MW to Everyone:
I have one but I do not think he is WHO I NEED TO BE SEEING. That is why my podiatrist recommended someone else

15:50:42 From Pat Gualtieri to Everyone:
Tim Kaine reintroduced Long Covid Bill: Comprehensive Access to Resources and Education (CARE) for Long Covid Act in March 2023. No action reported at this point

15:51:18 From Glenn Ribotsky to Everyone:
In the DC area, I usually think it’s a good idea, if you have a somewhat mysterious neuropathy, to see if you can get into the Johns Hopkins system–definitely one of the better neurology departments, and has done a lot of research on neuropathy (including developing skin biopsy back in the 80’s).

15:51:48 From Peripheral Neuropathy Support Network to Everyone:
I like my neurologist, Dr. Swetha Thukuntila, with Innova. She isn’t that far from Springfield.

15:53:44 From Glenn Ribotsky to Everyone:
Other major neuropathy centers include Weill Cornell in New York, Massachusetts General in Boston, Jacksonville Shands in Florida, the Jack Miller Center in Chicago (affiliated with Northwestern), Mayo Clinic, University of California San Francisco. One tends to be a lot less likely to be labelled “idiopathic” at such specialized tertiary centers.

15:54:04 From MW to Everyone:
@R: I love to be barefoot!

Although not as safe as

15:57:38 From Peripheral Neuropathy Support Network to Everyone:
I recommend investing in GOOD shoes.

16:18:10 From Peripheral Neuropathy Support Network to Everyone:
Rich, I don’t see a way to save chat on an iPad.

16:29:22 From Peripheral Neuropathy Support Network to Everyone:
I have a great podiatrist, Dr. Man Cho (Inova), who is very good. He just fixed my neuropathy-caused foot ulcer through surgery.

16:37:43 From Glenn Ribotsky to Everyone:
Link to WNA article on Essential websites. https://pnhelp.org/application/files/3616/5818/0276/Essential_Neuropathy_Websites_WNA_Conference.pdf