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10-08-2008, 09:08 PM | #1 | ||
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Member
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Hi
I am a 55 yr old male who has been diagnosed with Idiopathic Peripheral Neuropathy. It started in my right forearm, and then progressed to my right shin, top of right foot and big toe. Once it started to effect the left hand side of my left foot I sought medical advice, but by the time I got to the neurologist I had it in my fingertips also. I was told that as it is Idiopathic, (having no known cause) there is no known cure, therefore no medication was prescribed. That was 12 months ago, since then the Neuropathy has taken over almost all of my right foot and progressed up to my right knee, fortunately no other areas have changed. While I am aware the effects of this condition vary between individuals, I am egger to hear from anyone who may be able to enlighten me on possible further progressions. |
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"Thanks for this!" says: | DejaVu (07-19-2015) |
10-09-2008, 08:51 AM | #2 | |||
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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 | #3 | ||
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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 | #4 | ||
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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 | #5 | |||
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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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Bob B |
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10-10-2008, 03:18 PM | #6 | ||
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I am still trying to access Lizajane.org but it comes up with a Network Error. |
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09-03-2011, 10:53 AM | #7 | ||
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10-21-2008, 05:35 PM | #8 | |||
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I was Dx with idiopathic PN also. Since I've been on this board and began using the methods given in the stickies I've had about a 90% reduction in pain and symptoms. You may be able to achieve similar results.
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10-21-2008, 07:34 PM | #9 | ||
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Just saw my GP & had my B12 retested.
The result from my Sept 07 test was 271 hence the normal reading I was given. Have started back on the B12 suppliment. Have read through the stickies, takes a while, there is a lot of stuff there. Taking all that into concideration I think I'll stay on the B12 & see how that goes for now. My symptoms are still very minor compared to most of you guys. I have some pain in the evenings, but havent resorted to the drugs yet. |
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10-21-2008, 11:23 PM | #10 | |||
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