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Why only limited diagnosis of cusses or PN?
Did your healthcare provider conduct a narrow field of potential causes of Peripheral Neuropathy (PN) or a full scale assessment to pinpoint the source of your PN? And if only a narrow scope search, why so?
The Foundation for PN lists some 30-odd causes for peripheral neuropathy (Causes | The Foundation for Peripheral Neuropathy). However, I have gone through two different healthcare providers, both of which only focused on eliminating diabetes, alcohol related and/or nutrition (vitamin deficiencies). Similarly, my eldest brother’s healthcare provider only tested for diabetes. And yet another brother’s healthcare provider, to the contrary, did multiple rounds of tests until they identified the source of his PN.
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Hello @tar94577, Welcome to Connect. Not an easy question for anyone to answer (just my opinion). I also have idiopathic small fiber peripheral neuropathy. There are different tests to determine if you have damaged peripheral nerves. The tests just show that you have neuropathy. I think the gold standard test from what I've read is the nerve skin punch biopsy where they take a small skin sample and physically count the number of nerves in the sample, more info: https://pmc.ncbi.nlm.nih.gov/articles/PMC9262281/.
I've often thought mine might be either hereditary or possibly because I have been in the pre-diabetes category which puts a person in the metabolic syndrome condition which has it's own known association with neurological conditions and neuropathy - The Metabolic Syndrome and Neuropathy: Therapeutic Challenges and Opportunities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881591/
Do you have pain with your neuropathy? Have you started any treatments or medications?
@johnbishop thx for the reply and links.
As to your questions:
1/ pain? Occasionally. In my right foot. My main symptom is numbness: in my left lower leg just above the ankle. And, in my right hand (when I bike) and in my right foot (toes to arch on good days or toes to heel on bad ones).
2/ treatment? My primary doctor has me on 2700 mg of gabapentin per day. (3times per day doses of 900 each). My current podiatrist is also having me go thru 5 sessions of ultrasound & a massage therapy of my right arch up to the behind of my shin.
3/nerve tests? The neurologists have each simply done a conductance (I think it was) test that showed them both: “yep, you’ve got PN.”
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1 Reaction@tar94577 Gabapentin doesn’t do anything to help the numbness. I only have numbness and some tingling but no pain. Prior to being diagnosed with neuropathy from nerve conduction tests my PCP prescribed Gabapentin but after a few weeks I told her it wasn’t helping and she consulted with the specialist who said it only helps with pain symptoms not numbness.
I ended up seeing 3 neurologists over the course of 7 or 8 years trying to find the cause of the neuropathy in my feet. I have pain, burning, and numbness in both feet, and after who knows how many tests( EMG, conductivity, blood, biopsy) no cause could be determined.
So after all that time and money spent, I was given the diagnosis of idiopathic poly neuropathy. Lucky me. I'm taking 3600mg of gabapentin and 1200mg of ALA to try and dull the pain.