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Old 04-09-2007, 07:16 PM #21
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Default Jarrett

Barbara, Sensory neuropathy is a disorder where the nerves of sensation are affected, as opposed to the nerves that control muscle movement. My guess is you have a sensory neuropathy.

It's time for you to collect your data. Ask your doctors to send you copies of all the lab tests they've done. Have you had nerve conduction studies? Get copies of those, too. Look at the list of tests on lizajane.org, or, if you are really ready to get into doing research on your own, any other site.

But do make sure your doctors investigate and look for a cause, before saying what you have is "idiopathic". How old are you now? Because the younger you are, the more important it is to look thoroughly.

Good luck with this.
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--- LYME neuropathy diagnosed in 2009; considered "idiopathic" neuropathy 1996 - 2009
---s/p laminectomy and fusion L3/4/5 Feb 2006 for a synovial spinal cyst
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Old 04-09-2007, 09:46 PM #22
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Default Thanks, LizaJane.

I'm 46. This started around 2002. It's just recently gotten to the point I can no longer deal with it without trying to find out what's going on and what my options are.

The neuro said 'idiopathic' like this was no big deal. I've been finding out it's anything but no big deal.

And yes, you're right. I don't have any motor nerve problems (yet and hopefully never) connected to the PN. I was so tired the other night when I read your post my brain had a major duh moment.

The PN was preceded by RLS. Or what I took to be RLS. There was never a formal diagnoses. But the symptoms are very obvious. The RLS started sometime around 1996. Good grief! How does one put all this together? Or is there even a 'together'? Kinda like a B-12 deficiency: The symptoms come on so gradually and at different rates for different symptoms that it's no wonder it sometimes takes forever to figure it out. It's difficult to know which symptoms are related and which are not.

I don't know how you all keep going. Sometimes it gets to be so depressing and discouraging. Having this pain and other stuff and not knowing how to go about getting it treated. Or even getting someone to do the things, tests, etc. that need to be done. And from what I've read of others problems here mine are minor compared to what they live with every day.
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