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10-09-2008, 08:51 AM | #1 | |||
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Senior Member
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that is the adventurous part of PN. No one knows how or if or where your PN will progress. It may progress, stay the same or even get better if you treat the cause effectively. Have you been given a thorough work up to determine a cause? If you go to lizajane.org you will get an idea of what tests should have been done for your type of neuropathy.
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10-09-2008, 03:56 PM | #2 | ||
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I have had all the normal tests that are carried out in this country to establish what type of PN I have. The website you refered me to has so far been unavailable to me. You mention treating the cause. As stated mine is Idiopathic (no known cause) I was told by my Neurologist to keep fit & healthy. I still work but are finding it more difficult driving & walking. I keep fit by cycling as often as I can but have to clip my feet to the pedals to make sure they don't slide off. I would still like to hear of other areas of the body that can become infected. Also can the discomfort beome so extreme that some people finish up getting limbs removed. |
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10-09-2008, 04:47 PM | #3 | ||
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Magnate
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--the Liza Jane spreadsheets are probably the most complete; they've been put together to provide tests to investigate neurological symptoms from many possible causes (not just peripheral ones, but central nervous system ones as well), and to track those results over time for patterns:
www.lizajane.org Also, up in the Useful sites, look under my name for the links to Dr. Latov's/Quest's serological tests for neuropathy, and the Poncelet protocols for the diagnosis of neuropathy. It's been my experience that unless one in under the care of a research-oriented neurologist at a tertiary center or teaching hospital, rarely is an extensive enough work-up done (many doctors are just not familiar with the many possible causes of the condition). |
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"Thanks for this!" says: | DejaVu (07-20-2015) |
10-10-2008, 08:44 AM | #4 | |||
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Senior Member
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Most neurologists are clueless as to the proper care & treatment of PN.
Idiopathic is too often labeled when the doc is bluffing, clueless, and wants you to gop away. Listen to Glenn. Go to Lizajane.org to see all the tests that should be done. Get yourself a neuro who is a specialist in PN & does research. Johns Hopkins, The Jack Miller Center, Cornell-Weill, & Mayo Clinic (my last choice), are good places to find a good neuro.
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10-10-2008, 03:18 PM | #5 | ||
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I am still trying to access Lizajane.org but it comes up with a Network Error. |
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10-10-2008, 05:36 PM | #6 | |||
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hi there numbfoot, I am a fellow kiwi
Personally I have found the treatment in NZ for PN is pretty good - I have had all the testing I need in terms of nerve conduction studies, emgs etc, which I am sure you have had too. I have sensorimotor axonal neuropathy, meaning that if effects both sensation (numbness) and motor function. It just depends on how aggressively you want to search for a cause - but one thing that I can absolutely guarentee is that knowing the cause doesn't necessarily make the treatment for the neuropathy any better. I have lupus, which causes my neuropathy, I have absolutely A grade treatment for my lupus but it does absolutely nothing for my neuropathy. My neuropathy still progresses despite treating the cause, go figure. What your progression will be is one of those unanswerable questions - there is just no way of knowing. I won't repeat my story here, it is rather a lenghty one, but if you search under my name you will find it easily. What part of NZ are you in ? I am in Auckland cheers raglet |
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"Thanks for this!" says: | DejaVu (07-20-2015) |
10-10-2008, 06:36 PM | #7 | ||
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Hi raglet
Thanks I am in Central Otago. I had the tests you mentioned then spent a week in Dunedin Hospital where they done a whole heap more including Spinal Tap & Nerve Biopsy. At one stage they had me examined by a whole team of Neuroligy type people. |
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10-11-2008, 03:05 PM | #8 | ||
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Member
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If you can't can't get the lizajane site to open, do you have an e:mail address? They have been very helpful to me and I would hate for anyone not to be able to get them. I would be happy to scan and e:mail to them. Just PM me if you have e:mail...
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"Thanks for this!" says: | DejaVu (07-20-2015) |
10-11-2008, 04:26 PM | #9 | |||
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Wisest Elder Ever
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Have you had a B12 test? if so what were your numbers?
"Normal" is not enough... some doctors are behind on what is really "normal". This is the first stop in fixing any neuropathy.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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"Thanks for this!" says: | DejaVu (07-20-2015) |
09-03-2011, 10:53 AM | #10 | ||
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