how to get a more difinitive diagnois for idiopathic neuropathy
how to get a more difinitive diagnois for idiopathic neuropathy
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how to get a more difinitive diagnois for idiopathic neuropathy
Interested in more discussions like this? Go to the Neuropathy Support Group.
Thank you Ray.
Your insight has been invaluable thank you very much for your input.
Thank you John.
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1 ReactionI've been dealing with idiopathic poly neuropathy for over a decade now, but only got my official diagnosis about 2 years ago. It took seeing 3 neurologists and 2 neurosurgeons, several EMG tests, blood tests, and skin punch biopsies to reach this conclusion.
No definitive cause can be determined, great. Will it get any better? Nope. Is there any real treatment available? Nope.
I'm already taking 3600mg of gabapentin a day to dull the pain, what happens when that's not enough any more? Who knows?
Am I angry and depressed? Yup.
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1 ReactionI also have idiopathic PN. I was taking 4 a day gabapent 600 mg each. Could not tolerate it made me loose balance and fall a lot. Weaned off of it.
Now using alpha ALA alpha lipoic acid, NAC, PEA/turmeric , B12 and fever few. Considering trying Hemp gummies and/or cbd with cbg oil
I'm taking ALA after my doctor recommended adding it to my list of supplements, and I think it helps make a difference. I'm taking 12 300mg capsules a day of gabapentin.
I've tried CBD products, with zero results.
My neurologist has not been any help at all in trying to find a cause. He seems to have just called it idiopathic and then given up entirely. I am considering finding a new neurologist at this point!
Good morning, arflmi33 (@arflmi33)
It may just be that your neurologist is simply disappointed in his own lack of good suggestions––as was mine when he'd finished my first EMG and knew––before telling me––my PN was idiopathic. I remember the scene clearly. A rainy August afternoon (2022). As I was pulling my jeans back on, the doctor walked silently to the window and stood for what to me seemed like half an hour but was more likely a minute or two, just lookig out at the rain. It took him that bit of privare time before he was able to turn and face me and speak the word "idiopathic," explaining what that meant for my PN. Since then, he's been unfailing honest, always assuring me that he's staying on top of the latest developments (and I know he is), promising me "I'll phone you first thing!" Fortunately, he's the kind of a guy I believe.
Best wishes,
Ray (@ray666)
I am a VA pateint and I was told that 900 mg Gabapetin was the maxium dose, Here I see that people are taking 2 times as much. Is this correct?????
I've been taking 4 times that much for over 3 years, 3600 mg. My doctor told me he won't prescribe a higher dosage than that to any one.
There comes a point where there aren't any more tests that they can perform if the results are always the same. I ended up seeing 3 neurologists and 2 neurosurgeons over the course of about a dozen years before receiving my diagnosis.
It wouldn't hurt to get a second opinion, but more than likely you'll have to go through the same tests again.
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