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Idiopathic Polyneuropathy: My endless journey to a near-diagnosis …
Neuropathy | Last Active: Mar 26 9:09am | Replies (126)Comment receiving replies
@ray666 - Hi Ray - One thing that I've realized in the past 7 years is that PN absolutely impacts us in different ways. As we've posted before, we do share similar symptoms but not exact. And that could likely be some clue. As I read various comments under different topics, I say to myself....wow, I had that at one time and now I don't (pain in toes), yes I have that balance issue as well and in my opinion, getting worse each year. Cause? Opinions vary from genetic to toxins. I have an odd symptom that left 5 neurologists scratching their head. It is what I call the blank look. This heading is right, endless journey which many of us share. Meanwhile, I focus on what I can do to slow down the progression. Are my efforts working? I think so. IF I bump into a cause, great. Even if I can get the cause, what do you do with that information. Because mine is axonal related, Mayo told me no cure. But as we are impacted by this, we sure would like to know the cause, wouldn't we. Idiopathic is not an answer, it's only a label. Those who have a cause are very fortunate. Meanwhile be well all and keep moving.
Ed
Replies to "@ray666 - Hi Ray - One thing that I've realized in the past 7 years is..."
Hi NJ Ed,
I feel your pain. I know about the blank stare. But I have you beat, It took 6 neurologists to get to My diagnosis: Idiopathic small fiber neuropathy. I am curious about your comment that you think your efforts are helping. What works for you?
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Good morning, Ed (@njed)
I have to chuckle when I read how you've left 5 neurologists scratching their heads. I feel I've done much the same thing too. And I too am determined to do all I can to slow down the progression. I'm not happy with how things are now, but if I can manage to keep things "how they are now," I'll call that success. My at-home PT routine appears to be helping (helping = maintaining the status quo), so I'll certainly continue with that. I too would love to know the cause, even if knowing the cause didn't mean I and my doctors were now on the threshold of a cure. I've long since stopped dreaming of a cure.
I recall the afternoon one of my neurologists told me the best label he could attach to my malady was "idiopathic." Although I knew what the word meant, when I got home (because I love the etymology) I looked in my dictionary, and learned that "idio," from the Greek, means "peculiar," and "pathic," also from the Greek, means "suffering." I had to laugh. I thought I might be able to make use of that the next time I'm on a long supermarket checkout line: simply announce, "I should caution you all, I'm the victim of a peculiar suffering. You may want to let me get to the head of the line."
Enjoy the weekend, Ed.
Cheers!
Ray (@ray666)