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anyone feel more burning/numbness when sitting

Neuropathy | Last Active: Nov 16, 2020 | Replies (177)

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@jesfactsmon

@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

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Replies to "@jimhd Jim, you are SO RIGHT ON!!! I want to tell a story about what happened..."

@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.

Doctor told me a few years ago that"We know a lot about the body but not much about nerves." suggested vitamin B12. Affirmed by second doctor last year. Of course i am only one example of a Athiritis/ Neuropothy situation others have had different experences.
As one ages we begin to hear and accept; "We are just going to have to learn to live with it." Lot easier to accept when one is 90 because we know it won't be too many years. i feel blessed in having lived 85 years without this problem. It's a matter of being thankful for all the years eveything worked so good and being grateful for what's left.

@jesfactsmon Hank, such a fabulous post from you! What is Haelan???? I am a two year breast cancer survivor so far, and never heard a word about it. My Neuropathy has been my focus, and I rarely think that I could have died from breast cancer, but I still want to know about Haelan? What the hell is it? Oy!!!! I totally believe in not doing radiation or chemo, if at all possible. That stuff is poison. I only had radiation into my tumor right during surgery, and refused more. I thought, I am not killing myself with that stuff. Lo and behold, I developed Neuropathy weeks after my Lumpectomy. Cancer took backstage to the Neuropathy. Anway, let me know about Haelan.... Love to you, Lori