Are we kidding ourselves?

Posted by bigjohnscho @bigjohnscho, Nov 28, 2024

The more I dig into the so called cures for neuropathy the more I become disillusioned. I am at the point of giving up and accepting that if the proffessionals can’t come up with an answer what chance have I.

Most of us no the names of the remedies out there but how many success stories are posted. Sorry to be a Jonah but it’s the way I’m feeling.

Interested in more discussions like this? Go to the Neuropathy Support Group.

kforrest | @kforrest | Dec 2, 2024

In reply to @julbpat "Yes, but this is tricky. I got them in my hips for years, and they worked..." + (show)

can you walk? were they cortisone shots?

Berk | @gba | Dec 2, 2024

In reply to @kforrest "Anyone get cortisone shots?" + (show)

the shots helped me, no more pain. The catch is, they were for gout. Isn't this a PN channel?

kforrest | @kforrest | Dec 2, 2024

for how long did they help

julbpat | @julbpat | Dec 2, 2024

In reply to @kforrest "can you walk? were they cortisone shots?" + (show)

Yes, I have no trouble walking. My answer means that cortisone shots can help with pain, but don't cure the cause of the pain when you have neuropathy.

Jenny | @fairymystry | Dec 6, 2024

Until a few minutes ago, I had no idea how my neuropathy was caused. Was on here looking for help for my best friend on another thread & saw something that caught my eye about PPIs and PN. I read it and realized that was absolutely the cause of my PN. Been taking PPIs for 21 years and developed PN about 5-6 years ago.

That being said, I tried several things to treat my Idiopathic Peripheral Neuropathy. About 18 months ago, I even tried a nutrition program (Blueprint) that claims that neuropathy is reversible and can be healed thru nutrition. I followed it strictly and even lost over 30 pounds in 4 months but there was zero change in the numbness in my toes. The Chiropractor that sold me the program claimed that my condition was severe so it may take a couple of months to notice a change but that 98% of his patients saw results in 8 weeks. It cost over $10K and, after several months on the program, at a progress-check, the doc actually accused me of not following it and that was the reason that I hadn't seen results. He tried to gaslight me, saying that he knows that I'm busy with work, claiming that most PN patients are seniors with time to do nothing but this program, and that I must not have been as strict as his other patients. I calmly left his office and never returned.

bigjohnscho | @bigjohnscho | Dec 6, 2024

Are you still taking the PPI?
I take Lansoprazole and have done for many years, my PN started about 3 years ago

John, Volunteer Mentor | @johnbishop | Dec 6, 2024

In reply to @fairymystry "Until a few minutes ago, I had no idea how my neuropathy was caused. Was on..." + (show)

Welcome JennyC573 @fairymystry, You are not alone in your neuropathy journey. My neuropathy started in my toes almost forty years ago and I'm still dealing with it at 81. I shared my story in another discussion here - https://connect.mayoclinic.org/comment/310341/.

I haven't been on PPIs but their is another discussion you might find helpful here:
-- Anyone seen research on long term Proton Pump Inhibitor use and PN?:
https://connect.mayoclinic.org/discussion/anyone-seen-research-on-long-term-proton-pump-inhibitor-use-and-pn/.
There's also another discussion on the Blueprint to Neuropathy? - https://connect.mayoclinic.org/discussion/blueprint-to-nueropathy/

fbw57 | @fbw57 | Dec 6, 2024

In reply to @fairymystry "Until a few minutes ago, I had no idea how my neuropathy was caused. Was on..." + (show)

And he calmly kept your money.

paulbse | @paulbse | Dec 7, 2024

I have had peripheral neuropathy for 30 years and have fallen victim to all sorts of "cures." NEWSFLASH: There is no cure for neuropathy! At best, you can hope to minimize the discomfort with a change in diet, eating habits, and medications. Find a good primary care doctor who is willing to work with you by trying different meds and strengths. I read about too many people who are taking a low dosage of gabapentin (what I am on) and are still suffering and are very dissatisfied. NEWSFLASH: You can take up to 3600 mg of gabapentin per day (24 hrs). Educate yourselves on everything you are taking and push your PCP to increase your dosage over time until you feel better. If your PCP will not do it, find yourself another PCP who will.

heisenberg34 | @heisenberg34 | Dec 7, 2024

In reply to @fairymystry "Until a few minutes ago, I had no idea how my neuropathy was caused. Was on..." + (show)

I'm sorry that you got sucked into this bogus program. There are no treatments/supplements that will cure or reverse severe neuropathy. Not being a medical professional, I can only share my experience with PN. If you glance over the comments from commenters here, you will see many hoping to get relief from some new, miraculous product. The truth is that 99% of these things are just scams to get your money. It is reprehensible that so many of these people prey on senior citizens looking for something, anything that will help with their pain. I know because I have tried some of them. The only way at this time to get some sort of relief from PN is medication or medical devices like spinal cord stimulators.
I truly hope that you can find something that will give you some relief. Perhaps someday something will be developed to really help those of us with PN.