anyone feel more burning/numbness when sitting

@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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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.

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@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.

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Thanks Rachel, feelings are mutual.❤

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@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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Hi @cnn you have the best attitude! You are a good example of someone for whom I felt I wanted to write my previous post that discusses online forums. B12 might be great for you to take and we all need some definitely. But I would suggest to you to spend a little time each day reading through some of the discussions here on Mayo Connect. I am almost positive you will find out some things you did not know and you might learn about some things you might want to try taking or doing that you had not heard of before. As an example, some people take R Lipoic Acid as a supplement and feel they get some benefit for their neuropathy. No two people are the same and no two people's neuropathy are the same either, at least not exactly. So what works for some won't work for others. But with interest and an open mind you just might find out a thing or two you will be glad you learned. And if you don't quite understand something or want more feedback, there are plenty of people here who are more than willing to share their opinions and experiences. Thanks for providing me with the lead in to use as an example of what I talked about just prior. All my best to you, Hank

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Rachel and Hank, I feel a love fest here. Can I be a member??? Where do I sign up??? Lori

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I appreciate your comments, I don't need anymore doctors to say "it's just something you have to live with" or "well we could try this but it may take a few months to see if it's working" I am always encouraged to know my journey has sole mates! One of my biggest challenges is doing something to get my mind off the pain, it is so constant and loud. God Bless you

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@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

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