What sort of diagnosis have you already received? Was it as a result of an EMG? Is it that word "idiopathic" that has you asking for more? It was for me, too, way back when I received my diagnosis. At the time, all my neurologist was able to say was "idiopathic polyneuropathy."
Like most of hit with the word "idiopathic," we want to know the cause––even though we're given to understand that "idiopathic" means the cause is unknown and likely to remain so. Since getting my diagnosis, I've learned a bit more about my disease; it's idiopathic large-fiber, predominantly sensory (with a touch of the autonomic) polyneuropathy.
That helps me manage my neuropathy going forward, but as for looking backward and knowing its cause? I've learned to accept that I'll likely never know.
I wish you success in solving the mystery of your own personal neuropathy as may be possible!
Hello @agiordano, I would like to add my welcome along with Ray @ray666 and others. I have idiopathic small fiber peripheral neuropathy. My Mayo neurologist thought it could possibly be hereditary but pretty hard to tell. You might find this webinar from the Foundation for Peripheral Neuropathy interesting if not helpful.
I'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.
I'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.
I 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 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!
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.
I 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
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!
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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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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Helpful -
Hug
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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