Neuropathy top Drs in US

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Hi everyone, my mom has been suffering from burning legs and hands for at least a year. They have run every test from blood to spinal taps to test for root cause. All the local Drs have come up with is to progressively give her more gabapentin which in my mind is not a solution. It's spaces her out and she is getting worse so they just up the dosage. Makes no medical sense to me. Somebody out there must be able to test and find root cause so symptoms can be addressed properly. She lives in Illinois but would be willing to go anywhere. Her quality of life is horrible and she's only 73 years old. Any suggestions out there.?

Desperate daughter here

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  • Posted

    l have learned that there many differant causes for nerve damage. In the process of finding what was causing mine I found my nerve damage and pain was caused by gout, bone damage and arthritis. so you really need find out what is causing the nerve damage which involves thinking outside the box for the cause. being Diabetic is a big risk for nerve damage, high cholesterol is another......the list goes on and on. check for existing medical conditions, this would be a good starting point. ask the Drs "would this cause nerve damage?"
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    • Posted

      That's kinda what they have done. They have run every blood panel for all autoimmune a from lupus, diabetes even MS. Spinal taps, MRIS and PET scans. I can't think of a test they haven't run sadly! No vitamin deficiency .. Nothing.. That's why I was hoping somebody could recommend a top doc to find root cause. The meds do practically nothing. She needs somebody to think outside the box and her local Drs in Chicago suburbs are not doing it. So frustrating to watch her have zero quality of life with no explanation. I appreciate your thoughts and hoping somebody can make a suggestion. Thanks so much
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    • Posted

      I went through the same thing. I found a RN that was quite helpful in  finding my problem. She was not trained the way Drs are trained and her medical expertise was from many years experiance from working with Drs an seeing what is what. Drs are trained by rote learning and if something does not fit they don't know what to do.

      only thing that I can say is to look at your mother's pre existing medical conditions and ask "can this be the cause?"

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    • Posted

      Interesting about diabetis - I am grossly overweight - about 4 stone - with no exercise and although take meds, i can't exercise properly. Of course i dn't eat properly, I have a chocolate treat making a bar last me 3 nights. I cut out breakfast as i get up and don't feel hungry. I don't normally eat bread but you are right, doctors do seem to learn by rote. I had a bad time with drs in England, and although not as bad as England, I still don't think a pain in my groin is anything to do with my back (unless its  referred pain and no-one says anything).

      In fact, no-one as far as my drs are concerned speak to me about my condition - its like following the leader, they tell you to go to Room xyz and they do tests but you don't know what they are doing it for.

      But they are better than the UK!!!

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  • Posted

    I also am plagued with peripheral neuropathy, and have been put through the medical gauntlet.  In desperation, using google I came upon the Univ. of Oregon's Linus Pauling Institute where research on using R alpha lipotic acid  to treat p. Neuropathy.  In trials conducted, it's been most effective, in comparison to other forms, in reducing pain symptoms.  They are now conducting long term studies to see if nerve damage can be reversed.

    R alpha lipotic acid can be purchased over the counter.

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    • Posted

      Thank you we will look into it. There have to be some solutions out there besides masking pain with drugs...i hope your symptoms improve as well!!!
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    • Posted

      I always thought that nerve damage can be reversed - just been reading about the repairing of nerve damage and the Bs.

      I will have a look at R alpha lipotic acid but doubt i can get it in Spain.

      Thanks for the info.

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    • Posted

      Did they state a dose?? I'm getting desperate. I'm in so much pain and suddenly. It's in my head now and neck. 3 weeks ago I didn't have that

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  • Posted

    Please to make your own determination as to the credibility of R alpha lipotic acid for np please google peripheral neuropathy and find Univ. of Oregon, Linus Pauling research and trials using R alpha lipodic acid.  Check it out.
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