Quote:
Originally Posted by Susanne C.
I was relieved to hear that this is not just my experience. I felt rejected by my neurologist when she told me there was no need to continue coming in every year, as if I had somehow been a bad patient. We had a good relationship and I trusted her, also I found her reassuring given the progressive nature of the condition. I left the office that day in tears, barely able to drive the short trip home, and was depressed for weeks. But it does make perfect sense. There is no treatment and she said she would feel like a charlatan for continuing to see me. I am sorry for hijacking the thread, but this comment meant a lot to me.
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Likewise. I usually only quote the pertinent parts of a post I'm responding to, but this one is different; the entire quote is relevant.
I was "cut loose" (and that was the exact phrase used by two of them) by all three neurologists I saw re my PN. One told me I could "check in once a year or so if [I]
want to, if it makes [me] feel any better about it." I wanted to smack him.
This is probably quite common with PN cases deemed "idiopathic". The neurologists order a bevy of tests based on their preliminary workup, and may order more follow-up tests depending on the results of the first batch. If/when they can't/don't find a good reason to go further, they cut us loose rather than ordering more and more obscure (and expensive) testing. A line has to be drawn someplace; where and why is where the debates begin. The
Liza Jane Charts/Spreadsheets have been of help to many people:
http://www.lizajane.org/
Many doctors
do feel bad about not being able to help us as much as they'd like to. Here's a candid admission from one doctor's point of view:
http://www.medpagetoday.com/Blogs/21266?
There may
not be a
cure, but I'm more hesitant to say that there is no
treatment. A tenet of medicine is that if you cannot treat the disease, treat the symptoms, and that is often the case with idiopathic neuropathies, albeit success rates still vary. I was told that treating my symptoms was all they could do for me (hence the "cutting me loose" part) but I've been through similar ordeals before (with Crohn's/IBS) and I beat that. Lots of homework (maybe more than some of the neurologists have done) can make a difference, including finding this place (
NT) and other websites/articles/discussion boards.
What has worked for me will not necesarily work for you or others, but what has worked for some others here has likewise not worked for me. Gotta keep on plugging and being your own advocate. They handed me a scrip for gabapentin (which I had been on before for other neuropathic pain and hated it.) I found (from here) that R-Lipoic Acid worked
better for me than gabapentin, and (on my own) that adding pantothenic acid (vitamin B5) helped even more:
http://www.diabeteslibrary.org/View....ntothenic_acid
There are a few other vitamins & supplements that are helping too, but long story short, I've effectively halted my PN's progression (for the time being, anyway), and I think I'm even getting some slight improvements (which can take longer). There are more examples in this
STICKY Thread:
http://neurotalk.psychcentral.com/thread43699.html
Hang in there (don't give up/in). Read. Learn. Try. Share.
Cuss the cliché -
We're all in this together!
Doc