Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

In reply to @margottaylor "Thanks John." + (show)
@margottaylor

Thanks John.

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I found the information too technical for my needs. Thanks.
mlmcg

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Referral request for NYC-area PN Specialist. Hi. I have serious PN in my feet causing pain and difficulty walking. My neurologist has proven useless and seemingly uncaring. Can anyone please refer me to ''the man or lady'' in this specific field? Thank you very much ! Brucelawreformer @ gmail.com

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peripheral polyneuropathy diagnosed in 1994 over time it gotten worse, also have restless leg problems, I have never been given anything that helps with this problem.

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@jlpdurham526
For restless leg syndrome, I faithfully drink about 6-8 oz. of diet tonic water each night before I go to bed. It has just enough quinine in it to quiet my legs. It's inexpensive (I get 2-liter bottles at the grocery store) and it basically is a great, non-drug solution to a devilish issue.

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@elizm

@jlpdurham526
For restless leg syndrome, I faithfully drink about 6-8 oz. of diet tonic water each night before I go to bed. It has just enough quinine in it to quiet my legs. It's inexpensive (I get 2-liter bottles at the grocery store) and it basically is a great, non-drug solution to a devilish issue.

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thank you, I will try that.

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@brucea

Referral request for NYC-area PN Specialist. Hi. I have serious PN in my feet causing pain and difficulty walking. My neurologist has proven useless and seemingly uncaring. Can anyone please refer me to ''the man or lady'' in this specific field? Thank you very much ! Brucelawreformer @ gmail.com

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Hello @brucea, welcome to Mayo Clinic Connect. I have small fiber PN in my feet and ankles but no pain, only numbness. I was diagnosed at Mayo Clinic Rochester but I'm guessing you are trying to find a specialist or neurologist close. I did a quick search and found a few possibilities that may be OK but I'm hoping someone in the area can offer a suggestion.

The Peripheral Neuropathy Center at New York-Presbyterian Hospital/Weill Cornell Medicine
https://neuropathy.weillcornell.org/our-physicians/

Columbia University Department of Neurology
http://columbianeurology.org/patient-care/peripheral-neuropathies

Have you been given a specific diagnosis?

John

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@elizm

@jlpdurham526
For restless leg syndrome, I faithfully drink about 6-8 oz. of diet tonic water each night before I go to bed. It has just enough quinine in it to quiet my legs. It's inexpensive (I get 2-liter bottles at the grocery store) and it basically is a great, non-drug solution to a devilish issue.

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I was looking up the meaning of quinine and found this articular.
The quinine in tonic water helps give it a bitter taste. People should not mistake tonic water for a healthful drink, as it may contain sugar and provides no additional nutritional value. Tonic water cannot help a person with leg cramps or restless legs syndrome.

The quinine in tonic water is very diluted. December 12, 2006, the FDA ordered unapproved quinine drug products to be removed from the market and cautioned consumers about the off-label use of quinine to treat leg cramps.

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@inspect28

I was looking up the meaning of quinine and found this articular.
The quinine in tonic water helps give it a bitter taste. People should not mistake tonic water for a healthful drink, as it may contain sugar and provides no additional nutritional value. Tonic water cannot help a person with leg cramps or restless legs syndrome.

The quinine in tonic water is very diluted. December 12, 2006, the FDA ordered unapproved quinine drug products to be removed from the market and cautioned consumers about the off-label use of quinine to treat leg cramps.

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@inspect28 @jlpdurham526
Nonetheless, it works; my doctors approve; and I sleep at night….

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Hi @inspect28, welcome to Mayo Clinic Connect. @elizm, @jlpdurham526 my wife gets leg cramps at night when she doesn't drink enough water and gets a little dehydrated so I think there is a little truth to what you both say. I think this article puts it in perspective:

Harvard Women's Health Watch – Will tonic water prevent nighttime leg cramps?
https://www.health.harvard.edu/bone-and-muscle-health/will-tonic-water-prevent-nighttime-leg-cramps

My thoughts are if you know something helps you then it's a good thing and I would keep doing it. The caveat is that it may not help everyone.

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@elizm

@inspect28 @jlpdurham526
Nonetheless, it works; my doctors approve; and I sleep at night….

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There is little if any quinine in it and filled with artificial sweeteners. Better off drinking plain water or checking with a reliable pharmacist.

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Hello @nanastable, welcome to Connect. Plain water works for me too! I just need to drink more of it. Are you dealing with PN? If you are there is another discussion on Connect that you may find helpful where others have shared their symptoms and what has helped them.

Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

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@inspect28

I was looking up the meaning of quinine and found this articular.
The quinine in tonic water helps give it a bitter taste. People should not mistake tonic water for a healthful drink, as it may contain sugar and provides no additional nutritional value. Tonic water cannot help a person with leg cramps or restless legs syndrome.

The quinine in tonic water is very diluted. December 12, 2006, the FDA ordered unapproved quinine drug products to be removed from the market and cautioned consumers about the off-label use of quinine to treat leg cramps.

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@inspect28 and @elizm I agree with elizm re: tonic water. It seems to work for me too – at least for the cramping! Maybe it justs helps with the hydration – but – different strokes…

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@johnbishop

Hello @nanastable, welcome to Connect. Plain water works for me too! I just need to drink more of it. Are you dealing with PN? If you are there is another discussion on Connect that you may find helpful where others have shared their symptoms and what has helped them.

Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

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I do have PN in both hands and feet, John.
I use Hemp Oil CBD salve from Real Scientific and 200 mg organic CBD oil THC Free from Natural Xtract. Plus a few other things when needed.
I have carefully researched, gone to very informative Medical Marijuana Expos in NYC and Boston. I continue to keep learning.

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@nanastable

I do have PN in both hands and feet, John.
I use Hemp Oil CBD salve from Real Scientific and 200 mg organic CBD oil THC Free from Natural Xtract. Plus a few other things when needed.
I have carefully researched, gone to very informative Medical Marijuana Expos in NYC and Boston. I continue to keep learning.

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Thanks for sharing. I have idiopathic small fiber PN but only have numbness in my feet and ankles. One of the supplements I take is 1.5 oz of organic hemp oil for the omega 3 and 6 along with other vitamins and supplement that provide nutrients that the nerves need. It helps but it's not a cure.

Continuing to learn myself. Actually it's one of my life's goals as I get older – learn at least one new thing a day.

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@johnbishop

Thanks for sharing. I have idiopathic small fiber PN but only have numbness in my feet and ankles. One of the supplements I take is 1.5 oz of organic hemp oil for the omega 3 and 6 along with other vitamins and supplement that provide nutrients that the nerves need. It helps but it's not a cure.

Continuing to learn myself. Actually it's one of my life's goals as I get older – learn at least one new thing a day.

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As do I keep learning!. I am looking into taking a course to be registered for Medical Marijuana. Want to share my knowledge and help others in time.
Also looking into some wonderful MasterClasses online.

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