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Has anyone found a treatment that helps with peripheral neuropathy

Posted by bigjohnscho @bigjohnscho, Jul 1 10:27am

I suspect that everyone on this forum has been searching for a medication that helps their neuropathy and even though you no that all the internet claims are false we continue to waste hundreds of pounds. Desperation is a powerful force. Has any one been fortunate enough to find a genuine treatment. I just can’t believe that there are so many awful people who prey on our vulnerability and knowingly orchestrate such elaborate scams.

Interested in more discussions like this? Go to the Neuropathy Support Group.

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SusanEllen66 | @SusanEllen66 | 2 days ago
In reply to @njed "@SusanEllen66 You are absolutely right. In August of 2019, I applied at Mayo Rochester. They contacted..." + (show)
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@SusanEllen66 You are absolutely right. In August of 2019, I applied at Mayo Rochester. They contacted me a month later asking for any reports. I sent everything to them. They called me in early November and gave me an appointment in mid Feb 2020. Since then, I've heard that it is difficult to get into Rochester. Not sure why, could be shortage in staffing since the pandemic.

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@njed I first went to Mayo in 2016. I was accepted because my doctor/pathologist wanted the Mayo doctors to make sure his diagnosis was correct.
I had a very rare disease (3 in a million).

The appointments were hard to get back then too.

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jenan | @jenan | 2 days ago
In reply to @putsy "Well I got my letter from the Mayo Neurologist dept. They did a “deep dive” into..." + (show)
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Well I got my letter from the Mayo Neurologist dept. They did a “deep dive” into my medical records. I had hoped that Mayo , since they have an extensive research, I had hoped that they could provide some new research treatments. The response was due to patient capacity and that they couldn’t offer any other treatments than what I am already doing. ☹️
So I am on my own. !
What is my personal treatment : I have left leg and left foot neuropathy. ( However there are many types of Neuropothathy). I have tingling sensation , easily irratedq by pants , socks, shoes, numbness down outer thigh, outside of leg calf, around the kneecap, around the ankle bone, and diminishing sandy feeling bottom of foot under toes and along right side of left foot. My personal daily health plan. AM. Alternating days of Physical therap exercises, yoga exercises, TENS unit application ( pads in proper place), Antiflamitory fruit, Greek yogurt, cinnamon, ginger, protein powder, apple cider vinegar, etc. shake, pils: D3, multivitamin, Tumeric, Krill oil,, multi vitam B vitamin. All of good quality. ( no synthetic ). ( there is a difference !). Deep tissue massage. ( look for a massage therapist trained in deep tissue massage). It’s not Swedish massage!). It can be painful sometimes). Accupuncture for pain in back ( after extensive failed back surgery). On going Pysical therapy, magnesium lotion on leg and whole foot.
It’s time consuming. I have to balance my daily life activities and what I do for my neuropathy.
I’m currently researching studies about the Sural nerve and Tibial nerve entrapment. Thanks for listening. Watch out for scams and poor quality ingredients.

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Hi
TRIED The Nerve Doctors ON YOUTUBE?
indeed it seems you have done everything except the ONE thing The Nerve Doctors recommend - synthetic B1. Yes, natural is always best. Except this. The female dr. explained why. The natural B1 is water soluble. The synthetic is fat soluble and is able to reach the Nerve through the fatty shield. You have come this far why not give them a try. They are on YouTube and Nuphoria. com.. I recommend YouTube first. Her discussions are convincing.

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jabrown0407 | @jabrown0407 | 2 days ago

I am not diabetic or even pre-diabetic and have struggled with neuropathy for over five years. Back in March I was put on doxycycline for a respitory condition and it has helped my neuropathy. I still have neuropathy, but the pain level is now down to a lvl 2, it has been as high as a 6. The doxy also resolved the burning sensation in my legs and seems to be helping my night sweats as well. All doctors involved agree that it is the anti-inflammatory portion of the doxy and not the antibiotic characteristic that is helping. I also have PMR and have been on prednisolone long term and that didn't touch the inflammation that the doxy is addressing. Hope this helps.

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gdj | @gdj | 2 days ago

I've had that for my two plus years out from surgery. Gabapentin helped - kinda.

About 5-6 weeks ago I switched to Lyrica. It has give me more relief.

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timmy2098 | @timmy2098 | 2 days ago
In reply to @cit10jetjockey "Scotch on the Rocks is the best pain killer but Gin and Whiskey also help. Just..." + (show)
Profile picture for cit10jetjockey @cit10jetjockey

Scotch on the Rocks is the best pain killer but Gin and Whiskey also help. Just sit in your favorite chair with your Playboy Magazine and sip your Scotch will make your pain go away. Just remember to rest for a while after sipping your Scotch. If you get up right away you might fall on your face.

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Great Idea !

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bitopanbordoloi | @bitopanbordoloi | 2 days ago

Yes. However depends on which stage of Neuropathy one is dealing with. I have say Level 2 or may be Level 3 Neuropathy accompanied by gait ataxia.

Currently I am in ''Blueprint for Neuropathy '' and improving. May be improved to level 2 from Level 3 in next six months.

The Blueprint 👇

1. Sleep at a stretch for 8 to 9 hrs.
2. Exercise for minimum 1hr or more. Follow Indian ''Yoga''.
3. Supplements
i) Vitamin B Complex
ii) Vitamin D
iii) Vitamin E
iv) R alpha lipoic acid
v) Levo carnitine
vi) Magnesium

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arv10 | @arv10 | 1 day ago
In reply to @bigjohnscho "I have been reading a little about the benefits of turmeric which it seems is included..." + (show)
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I have been reading a little about the benefits of turmeric which it seems is included in some supplements and in most cases it states that it is the curcumin in the turmeric that is important(hope I’ve got the correct spelling) .Where do you buy the turmeric,is it a powder? how do you take it and at what dose. Any information would be helpful.
Thanks, John

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Hi John, I am in United Kingdom and I buy tablets which are recommended by a few. Company called Garden of Life . Infact, the Companys HQ are in USA.
Good luck regards Arvin

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loracnagak | @loracnagak | 1 day ago

Hi, I'm new to this group. I take something that is used off-label called topiramate (commonly known as topamax, which is used for seizures & migraines). It doesn't work for everyone, and it is controversial. It also has many side effects. I have used it since 2016. It must be titrated slowly up to the right dose. I tried all the other first-line medications, and alpha lipoic acid upsets my stomach. I also tried topical creams. I do believe it's important to exercise every day and keep the areas of pain moving.

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kadfrompa3232 | @kadfrompa3232 | 1 day ago

I know they all seem to have the cure all or a way to reverse it. There is some interesting info out there. I have asked many questions when I see someone having success with a product in the Facebook neuropathy group.
I really want to get away from the typical meds. This business of "I guess you will have to live with it." gets a bit old after years with it. They are not open to holistic or natural possibilities for relief, Actually I checked out a type of treatment with what is called Active Integrated Medicine. It seems promising but again not inexpensive. I am not a fan of gabapentin or pregabalin {Lyrica). It is a never ending search for those with PN or any form of neuropathy. I had all of the symptoms in 2018 and did not have diabetes, although within a few years after an A1C test I was diagnosed simply because my A1C was over 6.0 when finally checked. I think alot more.. One of the Facebook posts . I really am amused by some of the "cures" that are posted as you scroll thru Facebook. I have had such burning in my feet I use Icepacks to ease the burning.pain. Keep researching though.

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rollingf | @rollingf | 1 day ago

Scotch neat! The ice (rocks) melts and waters down the scotch!

Try a "Rusty nail" -- Your favorite scotch 1 shot and Drambuie 1 shot. After a few rusty nails, you won't care about any pain. You also won't care about much of anything.

I've had PN since 91, it confirmed my doctor's diagnosis of Type 2 Diabetes. Also, my allowance for scotch has been reduced to zero!

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