Are we kidding ourselves?

Posted by bigjohnscho @bigjohnscho, Nov 28 8:52am

The more I dig into the so called cures for neuropathy the more I become disillusioned. I am at the point of giving up and accepting that if the proffessionals can’t come up with an answer what chance have I.

Most of us no the names of the remedies out there but how many success stories are posted. Sorry to be a Jonah but it’s the way I’m feeling.

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

@paulbse

I have had peripheral neuropathy for 30 years and have fallen victim to all sorts of "cures." NEWSFLASH: There is no cure for neuropathy! At best, you can hope to minimize the discomfort with a change in diet, eating habits, and medications. Find a good primary care doctor who is willing to work with you by trying different meds and strengths. I read about too many people who are taking a low dosage of gabapentin (what I am on) and are still suffering and are very dissatisfied. NEWSFLASH: You can take up to 3600 mg of gabapentin per day (24 hrs). Educate yourselves on everything you are taking and push your PCP to increase your dosage over time until you feel better. If your PCP will not do it, find yourself another PCP who will.

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Finding a good PCP is a difficult thing because most medical practices do not let you see the doc. Only a PA of CRNP. Even pain specialists are often so busy that they cannot spend the kind of time needed to fully evaluate you. I found a private practice neurologist several years ago who spent an hour and a half during my initial consult. That's unheard of. Perhaps there are still some of those docs out there, but, who knows.

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I hear you loud and clear. I would encourage you to keep looking. Have you tried different medical devices like spinal cord stimulators, Sprint PNS? Not a magic bullet, but may reduce your pain level to a more tolerable level. My first SCS reduced my pain from a 7 to about a 2-3. Not perfect but gave me an almost normal lifestyle again.

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@fbw57

And he calmly kept your money.

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The typical story for these scam artists. However, I will say that I had a chiropractor a few years ago who had me on a program of diferent therapies that cost a pretty penny. I was receiving no benefit at all. About half way through the program, he called me into his office and told me that since I had no received any relif at that point it was unlikely that I would with continued treatment. He said that I should stop the treatments and he would refund the balance of my money. And, yes, I did get a check in a few days. So, there are a few reputable guys out there.

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@heisenberg34

Finding a good PCP is a difficult thing because most medical practices do not let you see the doc. Only a PA of CRNP. Even pain specialists are often so busy that they cannot spend the kind of time needed to fully evaluate you. I found a private practice neurologist several years ago who spent an hour and a half during my initial consult. That's unheard of. Perhaps there are still some of those docs out there, but, who knows.

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I guess I have been lucky. I found PCPs, over the years, who took the time to listen to me and work with me in North Carolina, South Carolina, Alberta CANADA, and Massachusetts. They are out there. I walked away from several who did not have my better interests at heart,

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So I just had to have a total nephrectomy and for some reason the symptoms in my feet and hands has temporarily cleared up. I am not prematurely jumping for joy, I am just thankful to be pain free these last few days.

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Neuropathy has been my unwanted companion for the past 14 years or so,,,,the first 2 or 3 years were
a constant struggle to maintain my sanity......my daughter and her Doctor told me to try the following
combination of drugs, although not the recommended or accepted medical treatment, it worked
for me...my neuropathy was close to a ten, with pain, needles, hot and cold feeling and sometimes my
feet would twist or felt like they were in a cramp...this is what brought my neuropathy from an 8 to a
manageable 2 for the past 10 years or so...
200mg pregabalin at 12 noon and 9pm
6mg hydromorph contin(slow release) at 7am and 7pm.

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