Living with Neuropathy - Welcome to the group

Hi,
After years of dealing with my symptoms alone I have learnt to rely on my own research and a suck it and see approach to"cures". Without scientific verifyable proof I won't go there. I dismiss all anecdotal evidence for what it is, someones opinion, without scientific proof. The curious thing is that apparently placebos can work, scientifically proven!
So where does that leave us?
Cheers

Ray,
Google shows EB-N5 is available online from “the company,” it appears. $149+ tax for a three-month supply. I didn’t see where a(n) Rx was needed. I’m going to order it as soon as my ALA bottle is out. Thanks for the recommendation.
I think it takes multiple processes to control PN. Enjoy your day!
P. S. Photo of my TENS unit

William,
I had suspected the need for a prescription was no more. And that's the same price I pay. You may find––as I have found––that once folks know you're using EB-N5, you'll be asked several times over if it's doing you any good. Like me, you may have to be honest and say you don't know, not if you're doing other things as well to combat your PN.
Ray

You are absolutely right. Alpha Lipoic Acid and TENS seem to be helping me. Talk to you later. W 😀

They’re having problems with funding

Hello! Glad to be part of this group. I have chemotherapy induced peripheral neuropathy (CIPN). I received chemotherapy for endometrial cancer from April through August 2023.
I have tried gabapentin, lotions, creams, B vitamins, nerve stimulators, and ice to mention a few, with little improvement. I also tried low level laser therapy last summer for 10 sessions, and I do believe it was helpful. I stopped it in October and now this March, my neuropathy is getting worse. Difficulty getting to sleep because of the pain, discomfort and burning, necessitating me to take naproxen and use ice socks at night. I’m thinking of starting again with the low level laser therapy treatments, but it is expensive to go in to the chiropractor for this without insurance payment, I’m thinking of buying a low level laser device, and upon doing research, it sounds like the one that would be best for me cost about $2000. I’m wondering if anyone has tried this device and have had success. I’ll be glad to hear your stories and any input. Thank you.

Welcome @collette2021, There is a discussion on low level laser therapy that you might find helpful - Anyone try LLLT red light therapy for helping with PN? - https://connect.mayoclinic.org/discussion/anyone-try-lllt-red-light-therapy-for-helping-with-pn/

You might also find this related discussion helpful:
-- Chemotherapy-induced neuropathy: What helps get rid of it?
https://connect.mayoclinic.org/discussion/chemotherapy-induced-neuropathy/

Hi everyone, it’s nice to meet you all, I am new to this whole community. I have struggled with health issues for quite some time. Over the last couple of years it’s become almost unbearable. I developed multiple spontaneous bone fractures, including pelvis and almost every rib ( I have osteopenia) , I have PN, lymphedema, anemia, kidney disease, arterial blood clots, avascular nercrosis of my hips, severe fatigue that comes and gos, cauda equina syndrome with neurogenic bladder and bowel, and now elevated kappa light chain, lambda is normal ratio is high and nobody seems to have answers! I do not have any diagnosis that normally explains reason for these symptoms. I am not diabetic, obese or sedentary. I have seen so many doctors desperately seeking answers and I am basically told I am a unicorn (rare and unusual)! Seems as though when something gets fixed something else breaks. I have a counselor who has reassured me none of its in my head. I have had a few good doctors that have also reassured me yet still no answers. Is there anyone who recognizes these symptoms and could give me a direction to search. I am buried under a mountain of medical bills and tired of doctors repeating expensive tests because they don’t like where something was done or they don’t have it in their own computer systems. Thank you for reading and any direction.

Hi @larsoncl101, Welcome to Connect. Sorry to hear you have so much on your plate. I know this has to be difficult for you to manage. I have PN, lymphedema in the legs (mostly my right one) and have had a few blood clots. I also have osteopenia but just in the watching mode now and trying to keep moving daily. While you wait for others to respond, I thought you might find it helpful to search Connect to locate related discussions that might be helpful based on some of your symptoms. Here are a few to get you started.

-- "cauda equina syndrome" - https://connect.mayoclinic.org/search/?search=cauda+equina+syndrome
-- "peripheral neuropathy what helps" - https://connect.mayoclinic.org/search/?search=peripheral+neuropathy+what+helps
-- "severe fatigue that comes and goes" - https://connect.mayoclinic.org/search/?search=severe+fatigue+that+comes+and+goes

You might also find the Foundation for Peripheral Neuropathy website helpful for complementary and alternative treatments and other information - https://www.foundationforpn.org/therapies/

Which symptom is the most difficult for you to manage?

For now