Living with Neuropathy - Welcome to the group

Tough question for me to answer since I'm really not a medical professional and am kind of in the same boat. I started taking the protocol since nothing else had worked for me and it does seem to have stopped or slowed down the progression which is what my neurologist told me would eventually happen. I have been working more on my overall health since I've mostly been in the pre-diabetes category for most of my life. The past 2 years I've focused on losing weight and maintaining it which has helped with the A1C number. I started focusing on that after learning about the metabolic syndrome and it's possible connection with neuropathy since I fit into the metabolic syndrome. Something doctors don't really talk about much which seems kind of strange.

If you want to read/learn more about it, here are some good references:
-- Diagnosis and Management of the Metabolic Syndrome
https://www.ahajournals.org/doi/10.1161/circulationaha.105.169404
-- The metabolic syndrome – What is it and how should it be managed?
https://journals.sagepub.com/doi/full/10.1177/2047487319886404
-- A comprehensive definition for metabolic syndrome
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2675814/
-- The Metabolic Syndrome and Neuropathy: Therapeutic Challenges and Opportunities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881591/
-- Metabolic syndrome as a risk factor for neurological disorders
https://pubmed.ncbi.nlm.nih.gov/21997383/

Hi Larry
So sorry to hear you have neuropathy, it is a very difficult disease to deal with. It has been
Also 1 1/2 year that I was diagnosed with chronic inflammatory demylinating polyneuropathy. At first I started taking a low dose of gabapentin and it did nothing for my pain a year later my dose was increased five times the original dose and my pain is now under control. It took a while to get there but it eventually worked.
You mentioned that your neurologist thought it might be inflammatory in origin, I have found that a healthy diet low in sugar and high in protein has helped me and daily exercise decreases my pain and improves strength in my lower extremities. John sent you a few great neuropathy websites and they helped me immensely.
Hope you and your physician find out what is going on and you feel better soon. Stay in touch.
Kim

My 79 year old mother is dealing with neuropathy. I see commercials daily about clinics for neuropathy. Are these legit or snake oil?

Hi @soonerchris, Welcome to Connect. My vote leans toward snake oil but then I'm no medical expert. It's good that your mother has you to help her navigate this condition. There is another discussion on neuropathy clinics that you might find helpful here:

-- Neuropathy Clinics: https://connect.mayoclinic.org/discussion/neuropathy-17/

A couple of legitimate sites to learn more about neuropathy and treatments:
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

Has your mother been diagnosed with neuropathy and on any treatments?

Hi Everyone,
so glad to find a place to learn about this awful condition.
Elder gal just wondering how I'm going live with this.
Look forward to meeting you.
Recently diagnosed with P
Neuropathy.
MMK

.

Hi MMK @mmksf, Welcome to Connect. I'm sure you have a lot of questions and you've found a nice safe place to meet others that share your symptoms and concerns. You are definitely not alone. There is another discussion that you might want to read through where members have shared their neuropathy journey.

-- Member Neuropathy Journey Stories: What's Yours?
https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/.
There are also some good sites to learn more about neuropathy that you might want to get familiar with:
-- Foundation for Peripheral Neuropathy - https://www.foundationforpn.org/living-well/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview

What is your most difficult neuropathy symptom to manage?

@johnbishop see's seeing a neurologist and is currently on Lyrica but still having pain and numbness. I've done some reading about The Protocal 525 and some of the other mineral and vitamin products. We ordered one of these but not The Protocol as I just read about it after ordering the other.

I'll do some more research and steer her away from a clinic.

Thanks for the info.

My name is Gary and I am 77 years old. I was diagnosed with idiopathic peripheral neuropathy 12 years ago and was told if it begins in a mild form it generally stays that way. Conversely if it begins aggressively it gets progressively worse. Is this true. My tingling and burning in the toes has progressed to mild electric shocks in the lower legs with stiffness and mild weakness in the quads. I have been taking Metanx for the entire time. Embarrassed to say I am not sure it works. A herniated lumbar disc with stenosis and radiation down the leg has come and gone a few times. Walking a few miles everyday no matter what has made the difference. Not sure what future holds

My diagnosis is PNS.
I understand the tingling and burning that you are experiencing. To start, I am sorry to here of your condition. I was unable to walk. My neurologist prescribed low doses of Lamictal and increased milligram slowly. 15 years after the onset of this condition rarely do my feet burn. I continued my care with the Neurologist that first started my case.
Wishing you the best.

@Hopefully53

HELLO GARY,
I WISH I COULD OFFER YOU INFO, WITH REGARD TO.NEUROPATH
BUTI HAVE ONLY RECENTLY BEEN DIAGNOSED WITH NEUROPATHY
AND I AM SQUEAKY BRAND NEW TO THIS CONDITION. I DO HOPE OTBERS ON THIS SITE WILL BE ABLE TO ASSIST YOU.
MY BEST WISHES TO YOU THAT YOUR PAIN IS BROUGJTNTO.AN END.SOON!
BEST OF LUCK GARY,
MMKSF