Living with Neuropathy - Welcome to the group

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

John thank you for your response. I am so technically challenged… So I just go to the neuropathy pages and click on the “last” and hope I catch the new ones. There’s so much information on this site.
I have a problem I don’t read much about my feet occasionally get hot but usually they are cold. Coldness started about a year ago in the tips of my toes and now cold and numb up to the balls of my feet. It’s causing me to lose my balance. Also my legs are getting weak and for a while I developed plantar fasciitis but have corrected that with wearing splints at night and changing my shoes. Anybody else have cold numb feet? And does the neuropathy cause weak legs?

@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

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

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!

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?

I just got back from the ER. My sciatica, lichen planus, rosacea, and interstitial cystitis all put my body on fire and pain. I believe the start was a lidocaine cream my dr tried to help with my pain. My rosacea started creeping down my body after my face turned beet red so in 2 days when I received a cortisone injection I warned the doctor/anesthesiologist that I might be allergic to lidocaine and he said no one’s allergic to lidocaine. An hour after the procedure when I got home the fun started. Rosacea, debilitating pain in my eyes around my head. Within hours all of my diseases were starting to go. I had overheard my dr tell another patient when I asked him about the lidocaine, he said don’t worry she just has a low pain threshold. Weird, at the ER today the dr said what do you expect me to do for you? No one’s allergic to lidocaine and ER’s and Urgent Care’s aren’t there to deal with pain. I’ll refer you to a neurologist and you can get dressed and leave whenever you’re comfortable. I was a free form boxer for years had my teeth knocked out and nose broken without even seeing a doctor or dentist. That pain isn’t bad. What do I do now? Please help. Having foolish thoughts.

@bustrbrwn22, So sorry to hear that the lidocaine is causing a flareup. Not sure why the doctors aren't listening to you. Here's some information I found that you might find helpful for talking with the doctor or at least seeking an alternative from the doctor.

-- Delayed-Type Hypersensitivity to Lidocaine: https://jamanetwork.com/journals/jamadermatology/fullarticle/479223
-- How to Address Patients with a Documented Lidocaine Allergy: https://www.pharmacytimes.com/view/how-to-address-patients-with-a-documented-lidocaine-allergy
-- Articaine as an alternative in lidocaine allergy: Case report of a seventy year old male patient: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7775968/

Are you able to seek help from another doctor?