anyone feel more burning/numbness when sitting

Blood work showed my B12 was low. I’ve been supplementing for over 2 years, my level is now 'in range' but the neuropathy persists!

@wisfloj Is B12 deficiency your underlying cause of neuropathy?

Been using b12 for about 3 yrs, still numbness in hands and feet, Guess we wll have to learn to live with it.

Rachel, my primary care Dr. thinks not since the supplementation didn’t help. No known cause! Had 7 vials of blood work done, MRI of cervical and lumbar spine also, and nerve conduction study. Not diabetic either. So frustrating-I read how we need to determine the underlying cause so proper treatment can be implemented, 'yeah right'!

Yeah, that really stinks. lm sorry. My B12 was 214 so I'm chalked up to a B12 deficiency as underlying cause, I guess.

Perhaps you can explain then, once your B12 is brought up to a normal level why didn’t the neuropathy resolve? I’m not being confrontational, just trying to figure this out.

Per my research... if B12 deficiency is not caught and corrected early enough, it may not be correctable and permanent nerve damage can result. There is no determining time, stage, phase. My neurologist looked at me, after concluding nothing else proved to be an underlying cause but, low B12, and said, "Maybe nerves will regenerate. It could take 2-3 years, if so."
No Dr. has a crystal ball with this disease. A lot of MAYBES get thrown my way. So, I hold on to hope and wait.

@cnn @wisfloj I don't know what the statistics are, but I've found that many of us who have neuropathy have no underlying condition, such as diabetes. The word "idiopathic" is the label we carry. It means that doctors don't know why we have neuropathy.

We do one test after another and sometimes learn more details about which neuropathy we have. After more than 5 years, I have a more definitive diagnosis - idiopathic small fiber peripheral polyneuropathy and the beginning of autonomic neuropathy. It's sort of nice to know that what's going on with my body isn't just in my head, but knowing a diagnosis is of little use if there's no treatment for it. Yes, there are lots of things that treat our symptoms, and what works for one person won't necessarily work for another. So, we try the next medication on the doctor's list.

I have a spinal cord stimulator that gave me up to 80% pain relief. I had the implant in 2017, and it worked great for over a year, but then it had to be adjusted every 3 months. Now, it doesn't do anything for my pain. A month or two ago I learned that I have spinal stenosis, and I'm going to have surgery in September for that, hoping that it will get me back on track with my neuropathy pain. It's possible that the stimulator could start helping again.

Prescriptions, OTC medications, creams and salves, medical marijuana, CBD products, stimulators - the list goes on. That's one of the great things about Mayo Connect. We can share with each other what has worked (and what hasn't) and more often than not we discover something that works for us. And even more importantly, dealing with something like neuropathy, having a group of people who understand is priceless. I've learned so much from this group, and I've been helped in many ways by them.

Hang around and enjoy a bit of camaraderie.

Jim

@jimhd Jim, you are SO RIGHT ON!!! I want to tell a story about what happened after my wife Linda's breast cancer diagnosis in July 2013. She had surgery in Nov. '13 and at her follow up appt the doc said she didn't get it all and said she needed chemo. So Linda started chemo in Feb. 2014 and it almost killed her. Chemo was obviously not for her, plus she developed neuropathy a day after her 2nd infusion. So, much against the stringent admonishments of her oncologist and other doctors, who basically said she was condemning herself to death, she quit chemo. Then, sure enough, in 2015 another tumor developed. She had it removed in July that year and her doctor strongly advised her to go back onto chemo (she was told radiation would not help, just chemo). She had already made up her mind she would never do chemo again, even if it meant death. Having seen what she went through on chemo I agreed she should not do it again.

I had really upped my time on the internet by this time, reading, reading. The breakthrough came in early August of '15. I had stumbled into a forum of women discussing breast cancer. Like Mayo Connect, there were hundreds of entries to pour through, maybe thousands, So I started reading all of the posts. In addition to learning a lot of things I had never heard or heard about from reading the standard clinical websites by doctors and researchers and specialists, I also found it a whole lot more interesting hearing people's personal experiences and their strong opinions about the gamut of things related to breast cancer, chemo, hormone therapy, etc. I was getting the nitty gritty from so many people who had been through everything one could imagine about these subjects. I learned SO MUCH. And the most important things I learned were things I would never have learned from a doctor.

Okay, so I am reading the breast cancer forum assiduously. Whenever anyone mentions anything I have not heard of I go look that up, I never let a word I do not recognize pass me by without finding out what it's about. One day I was reading and someone mentioned something called "Haelan". No idea what this was so I went and found out about it. Now the next part of the story is likely to raise the skepticism hackles on the backs of some people's necks. But the bottom line is that I found out a ton of information about Haelan and it's unbelievable effectiveness at stopping cancers in their tracks. After reading all of the science I could find about it, and discussing it at length with Linda, we decided to order some cases of Haelan. She started taking it in Sept. of 2015. She has taken it every day since then and after having had 4 previous occurrences of cancer before taking it, she has not had a single one since. So, regardless of whether anyone buys the idea that this stuff works or not, we are definitely convinced that it has kept Linda cancer-free.

So, the moral of the story is, read the forums! That is often where you will find the straight skinny about stuff, much more often sometimes than you will on the clinical oriented websites. I do not say don't read them as well, just make sure to expose yourself to real people's experiences as well as they are a goldmine of amazing gems of information. If I had not started reading the posts on Mayo Connect and interacting with every here, I would not have found out so many interesting things. For example, the nerve stimulators various people are using now for pain has been something I learned about here. Also, more recently, low dose naltrexone, which Linda is going to start taking, which we are hopeful might help her fibromyalgia (and perhaps her PN as well).

So there you have it. My personal testimonial as to the usefulness of reading these forums. And Mayo Connect is the best run forum i have ever come across by the way, hands down.

Best, Hank

@jesfactsmon Bravo! Excellent write up and so very true. We are lucky to have you (and Linda) here with us to learn from as well. You're a GOOD man Charlie Brown.