Living with Neuropathy - Welcome to the group

@burningfeetinphoenix
@kansasgal
The above members talked about 10%Phentoin cream. (Phentoin is a seizure medication. I have heard some people get relief from it. It has to be made at a compounding pharmacy. Hopefully they will let us know how it’s been working.
Jake

Yes, I tried the Phentoin cream and sad to say it did not work for me. But, that doesn't mean it won't work on someone else. Good luck in your journey. Kansas Gal

@kansasgirl
Thank you for replying!!!
Jake

Chris, I am really only interested in recent information about neuropathy. If that’s not possible I can sort through the messages and find what I need. I appreciate your concern. I really appreciate this website.

My dad developed trigeminal neuralgia and he also thought it may have been a result of a MOHS surgery on his temple. He is under the care of a neurologist and the medication he is on relieves the pain but makes him sleepy. Good luck!

Hello @jetsetter and welcome to Mayo Clinic Connect. Thank you for joining and connecting with @bloufitz when you noticed a similar experience to that of your dad's.

Can I ask how long ago your dad developed trigeminal neuralgia?

Good evening once again. I am sorry I was unable to give you what you want. I think it is time to ask @johnbishop to share the links to the sites with the latest information including national organizations and his favorite Google Search.

As you are probably aware, there is currently no cure for neuropathy. And sometimes there is no cause to be identified. ....And there are reportedly more than 200 different types of neuropathy. We try to mitigate the pain, the numbness, the tingling, and any other symptom that rears its ugly head.

I have had diagnosed neuropathy since 2013 when surgery and fusions in the cervical area were attempted to try to relieve distressing and debilitating pain in my arms, wrists, and hands. I now have two sessions of MFR. myofascial release therapy, every week to keep me walking without assists. Medical cannabis is my only choice for pain control.

I think that John will also warn you to avoid falling for the scam artists that prey on our desire to find a solution.

How long is "recent"?

May you have comfort and contentment.
Chris

Hi @bcool123, Neuropathy definitely is a bummer with no cure as @artscaping can confirm. I think the best we can hope for until a cure comes along is to find something that provides relief from the symptoms of neuropathy. I have a couple of websites that I try to keep an eye on for research information. The first one Neuropathy Commons is really good for learning more about neuropathy to give you a better understanding of what you are facing. The second one is The Foundation for Peripheral Neuropathy which I like because they try to stay on top of newest research and have a good section on complementary and integrative therapies for neuropathy. The other one I use to see if there are any new information on specific treatments is Google Scholar (https://scholar.google.com/) because you can easily sort the results by the year and it

-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/research/

Example: Google Scholar search using "latest developments in the field +neuropathy" --- https://scholar.google.com/scholar?as_ylo=2021&q=latest+developments+in+the+field+%2Bneuropathy&hl=en&as_sdt=0,24

There is also a good older discussion here on Connect on How to Avoid Quacks and Snake Oil Treatments: https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/. Then there are a couple of sites I use if I happen to be looking at something that I think may be too good to be true 🙂

FDA's Health Fraud Page
-- https://www.fda.gov/ForConsumers/ProtectYourself/HealthFraud/ucm539101.htm

NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
-- https://nccih.nih.gov/health/decisions

@bcool123 You mentioned in an earlier post that your feet and toes get cold. My feet and especially the toes get cold in the winter living here in Minnesota. I found some neoprene toe sleeves that work really well to keep the heat in the front part of the foot, but I only use them in the winter time -- https://www.amazon.com/gp/product/B076B3VTRM/

Hope this helps!

@bcool123
“ And does the neuropathy cause weak legs?”
Yes it can, in fact it can be one of the first symptoms.
I have completely numb feet but not cold or hot. But my numbness didn't happen until nearly 30 years after my diagnosis.
Does your numbness cause you gait or balance problems?
My primary problem is balance & gait but seizures, treatments & related comas contribute greatly to these issues.
I go put my shoes & socks on multiple times a day but there already on & vice verse.
Jake

John, not sure if my last reply went through but I want to thank you for responding and I will check out the website said you’ve mentioned. Sitting here on the back porch in Colorado waiting for it to rain so I have plenty of time to look them up. Thanks again