Neuropathy: What works and what are scams?
I am new to this forum although I have been suffering with peripheral neuropathy for 2 years (none diabetic). Like most sufferers I have searched endlessly to find supplements that provide some relief and a possible cure. My search has proved how impossible this quest is and so expensive due to misleading adverts and down right scams.
What would be really helpful if members posted their experiences with supplements they’ve tried , which were useless/helpful or obvious scams. I am sure there must be some helpful supplements out there and we would all benefit if these were posted on this forum.
Interested in more discussions like this? Go to the Neuropathy Support Group.
Just curious, did you watch this video? Is it a bunch of crap? I don't know. Seems to me if some Neurologists haven't even heard of this then maybe there is research and information that they don't know about.
I agree re: acupucture helps..I go every 5 weeks to keep pain levels down in my neupathic -caused pain in mt toes and big toe!
To everyone in this discussion:
A friendly reminder about the Community Guidelines (https://connect.mayoclinic.org/page/about-connect/tab/community-guidelines/). Please see in particular guidelines 1 and 2 excerpted here:
1. Be careful about giving out medical advice
- Sharing your own experience is fine, but don't tell other members what they should do.
2. Remain respectful at all times.
- Exercise tolerance and respect toward other participants whose views may differ from your own. Disagreements are fine, but mutual respect is a must.
- Personal attacks against members or health care providers are not acceptable. Such posts will be removed.
Be supportive. Be kind.
If anyone has further questions about the guidelines, please contact me using this form: https://connect.mayoclinic.org/contact-a-community-moderator/
With respect to vitamin B6 toxicity, see this reference from the National Institues of Health https://ods.od.nih.gov/factsheets/VitaminB6-Consumer/#:~:text=People%20almost%20never%20get%20too,they%20stop%20taking%20the%20supplements
EXCERPT:
"People almost never get too much vitamin B6 from food or beverages. However, taking high amounts of vitamin B6 from supplements for a year or longer can cause severe nerve damage, leading people to lose control of their bodily movements. The symptoms usually stop when they stop taking the supplements. Other symptoms of too much vitamin B6 include painful, unsightly skin patches, extreme sensitivity to sunlight, nausea, and heartburn.
The daily upper limits for vitamin B6 include intakes from all sources—food, beverages, and supplements—and are listed below. These levels do not apply to people who are taking vitamin B6 for medical reasons under the care of a doctor.
Life Stage Upper Limit
Birth to 12 months Not established
Children 1–3 years 30 mg
Children 4–8 years 40 mg
Children 9–13 years 60 mg
Teens 14–18 years 80 mg
Adults 100 mg
Some experts recommend lower limits for vitamin B6. For example, in 2023 the European Food Safety Authority set an upper limit for vitamin B6 of 12 mg per day for all adults, with lower amounts ranging from 2.2 to 10.7 mg per day for infants and children, depending on age."
You just made her case. 1 cup of chicken peas contain .2mg of b6. So to get 100mg of b6 means you would have to eat about 500 cups of chick peas to equal 100mg b6. The recommended b6 is 1.5mg for most adults . 100mg is excessive.
You have referenced NIH in your post. Here is an NIH reference article on B6.
https://ods.od.nih.gov/factsheets/VitaminB6-HealthProfessional/
Are you using an essential oil straight with no carrier? I am going to try.
Welcome @kathiev, I suppose it might depend on the specific essential oil. It's been quite awhile since I've used essential oils but I always used a carrier oil since it was recommended to me not to use them without using a carrier oil.
"People make essential oils through the distillation of the aromatic leaves, flowers, barks, and roots of plants. If they apply these oils directly to the skin, however, they can cause reactions, such as severe irritation, flushing, or burning. Carrier oils dilute the essential oils and help “carry” them into the skin."
-- What is a carrier oil? Best oils and uses: https://www.medicalnewstoday.com/articles/321639
Have you read something that said to use the essential oil without a carrier?
Thank you for moderating.
Yes, you are correct, there are folks who wall off into camps...
All natural medicine is quackery
or
All regular medicine is terrible.
I really don't mind people walking off into camps and expressing their views.
But when that includes personal criticisms, like the one I received...
That my post was "dangerous?"
Then, yes, that goes way way way too far.
I did not post my opinions. I posted a link to the opinions of Dr. Andrew Weil. He is an MD, not a snake oil salesman. He is highly regarded and nationally. Has appeared on national TV and on.
If I can't post information from him? Well, then my freedom of speech is really being suppressed.
And I definitely do not like that. At all.
Not too much being called "dangerous," and over nothing. What comes after being called "dangerous?" It literally makes me nervous that I am interacting with someone who might engage with threats.
Not ok.
The original post ASKED FOR ideas. I have some neuropathy myself. The subject is interesting to me. So I did some Google searches, both for the original person posting and for myself.
I find some info that I thought might be helpful and I posted it.
I have been a volunteer with the Community Food bank of NJ for 20 years. I did reading for the blind for 10 years. I love volunteering and I love helping...and I have been doing that since I was 13 years old, 50 years ago.
That is why I posted. Not to be a contrarian or to upset people. But simply try to help.
And I still need to learn a lot in order to solve my own problems.
I came on to these Mayo Clinic boards for a very simple reason. My wife's mother got diagnosed with pancreatic cancer.
I came on here and joined that support group, in order to find out information.
Within 3 weeks of being diagnosed, she passed.
It was, needless to say, a horror show for the family.
When I come on these boards, the memory of her passing is always in my mind.
Or, to be precise, the love of family comes to mind.
And to be in that state and have someone call me "dangerous?"
It is not ok. In addition to everything else, you are definitely interfering with the memory of my wife's mother. And that is not ok. It is not ok to throw mud on those human memories.
If you disagree with me, disagree with me.
But stay civil.
I am like anyone else in society who has reached my age...connected to all sorts of people. And, if threatened, I have connection to law enforcement and politicians, like anyone else has.
I remember being in a support group online when one member tried to ...literally, encourage another member to commit suicide. These things are not fantasy, they are not games, they are not ok. I called the police. They came over. The officers saw the posts, they were very concerned...and they took action. I don't know what they did...but like any decent person, they tried to protect someone from taking their life.
Please stay civil.
Thank you. I also get acupuncture. I get it for injuries from car accidents. It helps.
In reply to @samcal9977zz "I think, generally, we are too quick to label something as "a scam." Sometimes a supplement..." + (show)
I agree re: acupucture helps..I go every 5 weeks to keep pain levels down in my neupathic -caused pain in mt toes and big toe!
It is very frustrating to patiently seek to find a root cause of neuropathy. I reached a point where I seem to get very little hope from doctors and I get sucked by supplement peddlers. Is there such a thing as the root cause of this condition? Has anyone been held? Is this orthopedic, metabolic or both? It seems to be a field of endeavor that would easily render super-status to someone or a company who can effectively tackle this elusive nightmare.