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Old 12-21-2009, 09:30 AM
Kiwiboy Kiwiboy is offline
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Join Date: Oct 2009
Location: Auckland, New Zealand
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15 yr Member
Kiwiboy Kiwiboy is offline
Junior Member
 
Join Date: Oct 2009
Location: Auckland, New Zealand
Posts: 30
15 yr Member
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Quote:
Originally Posted by glenntaj View Post
the immune modulating therapies seem merely to slow down or arrest the damage process, allowing other cells to take over some functin from damaged ones. Unlike axons, which can regenerate if damaged when the cell body is intact, if cell bodies die, they are not normally replaceable. That is why the genetic manipulation studies are so exciting, if we can re-program cells to re-grow or become the specialized sensory cells of the dorsal root ganglia.
Thanks Glenn , another informative response. One thing I am still struggling to grasp is - if, lets just assume for a moment that my Neuronopathy *is* toxic in nature, due to long term exposure to a recreational inhalant. why would the burning & pain etc come on months after cessation of said exposure. I did read somewhere, for example, that the lapse between exposure to Nitrous Oxide and onset of neuropathy symptoms can be anywhere from 3 months to 5 years. One might expect, immediate damage from toxic exposure, resulting in immediate symptoms? Although I was having night time, ulnar nerve parasthesias in my left hand for 3 months prior to any pain/burning.

Also, the link you posted earlier: http://neuromuscular.wustl.edu/antibody/sneuron.html

I'm guessing I'm in the 'Sensory Neuronopathy - Small Fiber' camp.(the bottom of the list on that link) The information states, "course - Progressive" I would never ask anyone to predict the course my Neuronopathy is taking, but it seems to have reached a plateau of sorts. following your onset Glenn, did you notice any remissions, flares, or did it simply reach an early peak and has slowly been resolving over several years? (or anyone else for that matter?) I guess what I am hoping is, as with autoimmune, toxic exposure Neuronopathies may also stand a chance at some resolution over time, like you have said, when remaining cell bodies take over the role of the 'deceased' and I take it there is no way of knowing the extent of damage (again, without being dead, in which case the answer is largely irrelevant). Does the plateau in symptoms indicate the peak of progression, or can these neuronopathies progress insidiously over years? It does concern me the muscle fasciculations I get potentially indicates some slow progressing motor involvement. But as I can't get a Neurologist to acknowledge anything neurological is even occurring (because I haven't lost pinprick sensation and I don't fall over when I close my eyes etc etc) it's hard to go much further or even stand any chance of arresting something that may be....well, arrestable (is that a word?)
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