Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

@pfbacon

I don't understand 'protocol' in this context. Is it like a medical 'program' ?

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Just the name the group gave the list of supplements and vitamins = the protocol 🙂

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Thanks … Peggy

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If I'm not mistaken, in the medical world doesn't "protocol" refer to the course of action or treatment for a medical condition?

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@margottaylor

If I'm not mistaken, in the medical world doesn't "protocol" refer to the course of action or treatment for a medical condition?

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@margottaylor you are correct.

https://www.google.com/search?q=protocol%20definition

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Now if only that knowledge would translate into having the cure for PN. 🙂

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Thank you John…I will look at the site. I just got out of the hospital with pneumonia .They cut me down to 600mg from 800mg of gabapentin every 6 hrs. I did ok. with the pneumonia I didn't care. When I got home I started taking gabapentin 800mg every 9hrs. I want so badly to off of gabapetin completely. I was told in the hospital that 800 mg every six hours was toxic. So wish me well on this venture. Thanks again for the information. JJ

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can anyone direct me to the site that suggest vitamins & other things for natural relief…PLEASE

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@jjwest

can anyone direct me to the site that suggest vitamins & other things for natural relief…PLEASE

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@jjwest – I'm not sure if this is the site you mean but I posted the information that helps me in an earlier post in the discussion here which has links to the site:

https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=90#comment-290889

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Some of you seem to have tapered off of gaba and lyrica … did you change to something else? I know one person who takes 'Stratera' – I have no idea how to spell it. I'm past the point of any vitamins or cbd or over-the-counter stuff helping (already done those). Peggy

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I was on that plus others ! Best thing I ever did was sign up with Mayo for pain management and got off most meds and learn a better way to deal and understand my needs. Mayo staff and doctor were not pills pusher BUT helpful in getting to know ME and my pain levels. We are all NOT “ one pills fits all”.

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@timerdude

I was on that plus others ! Best thing I ever did was sign up with Mayo for pain management and got off most meds and learn a better way to deal and understand my needs. Mayo staff and doctor were not pills pusher BUT helpful in getting to know ME and my pain levels. We are all NOT “ one pills fits all”.

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Good Morning @timerdude
It is wonderful that MC was able to help you!
If is also wonderful that you were able to get an appointment!
Continued success in your journey to a pain free (or at least livable) life!
Ronnie (GRANDMAr)

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Thank you. I was blessed with a appointment so quickly because someone had canceled. I was willing to wait for a few weeks , if it were not for this cancellation! After a long time of dealing with my issue, waiting for awesome care, was worth waiting for the best help from Mayo!

Liked by Jennifer Hunter

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@timerdude

Thank you. I was blessed with a appointment so quickly because someone had canceled. I was willing to wait for a few weeks , if it were not for this cancellation! After a long time of dealing with my issue, waiting for awesome care, was worth waiting for the best help from Mayo!

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So what was the treatment plan that MC put you on that was do good.

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Mayo Clinic told me that they aren't taking any new neuropathy patients. I guess they are swamped. Since there are so many of us (I think I read 24 million people) who have neuropathy/chronic pain, it's time for the R and D companies to find better medicine for pain. Peggy

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@daviddd

So what was the treatment plan that MC put you on that was do good.

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Check out or call the Mayo and ask about the Pain Management Program. They will tell you all you need to know. My pain level is better control with the information and classes and medical team that took care of me. Worth the call and you can learn a lot from the Mayo Clinic.

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