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02-21-2009, 09:44 PM | #1 | |||
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Senior Member
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i have had PN for over 7 years now. It has progressed steadily from my big toe on both feet to just below the knees and in my hands past my wrists. In the beginning it was very painful in my feet, stepping on a pebble was like stepping on an ice pick. My feet and legs eventually progressed into a deeper degree of numbness which helped the pain , along with many other things i have tried to differeing degrees of success, tens, interferential therapy, vitamins, wellbutrin, neurontin, lyrica, topamax, paxil, effexor, trazodone. Except for wellbutrin which did help the pain, the other drugs i did not react well to. Recently in the last 9 months the pain has started to ratchet up again in my feet especially.
Because of deep numbness in my feet my balance is very bad, ironically i also feel like i am walking or standing on broken bones even through the numbness. 20 minutes is it for me standing. I also drop or knock over a lot of things with my hands. I have waged a long war with PN and feel that im losing badly. |
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"Thanks for this!" says: | armac (02-22-2009) |
02-22-2009, 11:52 AM | #2 | |||
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Senior Member
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Since the invention of pain
(& the wheel, & fire, & flint tools) :-(
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Bob B |
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02-22-2009, 02:31 PM | #3 | ||
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Grand Magnate
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Quote:
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Kitt -------------------------------------------------------------------------------------------------------- "It is what it is." |
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02-22-2009, 03:06 PM | #4 | |||
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Senior Member
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diagnosis is sensory motor primarily axonal with demyelination peripheral neuropathy. Official cause is ideopathic, though im sure it was caused by toxins.
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02-22-2009, 04:46 PM | #5 | ||
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Grand Magnate
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Just curious if you ever had any DNA blood testing done for a hereditary syndrome?. Anyone else in your family have anything similar? Thank you.
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Kitt -------------------------------------------------------------------------------------------------------- "It is what it is." |
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02-22-2009, 05:48 PM | #6 | |||
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Senior Member
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no one in my family has had anything similiar from what i can find out.....i have asked around at family reunion and from relatives but nothing has come up.
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02-22-2009, 06:44 PM | #7 | ||
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Grand Magnate
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Thank you. Have you ever considered having DNA blood testing for CMT that they can now test for? There are many types and sub types. A spontaneous mutation is considered rare but it can and does happen. Just a thought.
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Kitt -------------------------------------------------------------------------------------------------------- "It is what it is." Last edited by Kitt; 02-22-2009 at 08:33 PM. |
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02-23-2009, 08:33 AM | #8 | ||
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Magnate
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I have had it 2 years. I have tried many meds from neurontin,lyrica so on and now just take an occasional vicodin which still does not manage my pain.
I am looking into more invasive treatment again. I have balance and walking problems. Along with touch or different textures. I have rsd too. I have improved in some ways but also spread so am not doing good in others if that makes sense |
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09-08-2009, 01:50 PM | #9 | ||
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Junior Member
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I've had PN about three years now.
Diagnosed as SFN - alcohol/liver disease is the "smoking gun" no other explanation forthcoming despite lots of blood tests and EMG. It was on and off for a year or so but now progressed to permanent. I get burning mainly in the toe/ball of feet but then for no reason apart from perhaps the temperature (?) it converts to numbness. Also more fatigued that I used to be - but not sure this is related. I take no painkillers only supplements -not sure they do anything but you have to try. |
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09-08-2009, 02:25 PM | #10 | ||
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Junior Member
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what kinda toxins were you exposed to
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