role of ongoing medical testing for idiopathic peripheral neuropathy

@njed ~ Around 2010, perhaps earlier, I started noticing the feeling that my sock was wadded up under my left big toe joint. I started getting electrical-type sensations in my toes, and burning in the ball of my foot. My primary and podiatrist both termed it "metatarsalgia" and recommended nothing other than orthotics. It kept getting worse, progressing to my right foot. In 2017, I asked for a referral to a neurologist who had an MRI done which showed a mild disc bulge and possible pinched nerve somewhere around L4. He said it could be the cause of my "neuropathy", but because I had no back pain, he said there was no treatment for it.
We moved out of state in 2020, and my new primary referred me to a neurologist who also acted like I was wasting his time. He said I needed to be on Gabapentin and that he didn't need to see me further. I tried it at a low dose for a month and said "no thanks." My primary asked me to try Lyrica, and I thought I'd hit the jackpot! It worked for about 3 years and then I needed a bigger dose. I'm currently at 75mg 3 times a day - and I'm having incredible burning, stabbing, electric shocks, and numbness. I've read a lot of posts in the neuropathy group of people taking low dose Naltrexone (between 1-5mg once a day) and having incredible results with it reducing all of those symptoms except for numbness. So I found a "compounding pharmacy" here in town and am picking up a 30-day supply later today ($55). My primary says he actually thinks this might work! It's worth a try, especially if it means I can quit taking Lyrica with all of its side effects! In my opinion, it's always good to ask questions and get second and third opinions if you have to. My brother always says, "Remember - doctors are 'practicing' medicine - they don't have all the answers." I guess that's true to a large extent. But with all of us in the "chronic pain" phase of neuropathy, it's good to have hope that there are doctors out there searching for ways to help us. I've also discovered on this 15-year journey that different things work for different people, whether it's medication, PT, exercise, topicals, and even surgeries. I wish all of us on this journey that seems to have no cure the very best. Keep searching and asking questions and sharing information. At least we can maybe help each other stay positive. God bless us all!

Ive realized there is no point. My last appointment with the neurologist a few days ago was not even 15 mins. Told me not to worry about the large bump on my tendon above the foot I got from exercising which he told me to do. I dont feel pain. In fact told me he didnt need to see me again, not to worry and go live my life. Didnt get a chance to mention that its getting worse. I did get to hear him pat himself on the back like he cured me or actually did something while rushing me out of the office. Im sick of being told to stay positive and that Im on some kind of journey. Im not some kind of “insert illness” warrior. All terms that trivialize how serious this is. All I want is help that isnt there. To hell with this “journey” I see how it ends.

@megidigo 15 minutes? You are fortunate. My last neurologist appointment lasted all of six minutes. As soon as I mentioned "neuropathy", he couldn't get rid of me fast enough.

@njed ~ Around 2010, perhaps earlier, I started noticing the feeling that my sock was wadded up under my left big toe joint. I started getting electrical-type sensations in my toes, and burning in the ball of my foot. My primary and podiatrist both termed it "metatarsalgia" and recommended nothing other than orthotics. It kept getting worse, progressing to my right foot. In 2017, I asked for a referral to a neurologist who had an MRI done which showed a mild disc bulge and possible pinched nerve somewhere around L4. He said it could be the cause of my "neuropathy", but because I had no back pain, he said there was no treatment for it.
We moved out of state in 2020, and my new primary referred me to a neurologist who also acted like I was wasting his time. He said I needed to be on Gabapentin and that he didn't need to see me further. I tried it at a low dose for a month and said "no thanks." My primary asked me to try Lyrica, and I thought I'd hit the jackpot! It worked for about 3 years and then I needed a bigger dose. I'm currently at 75mg 3 times a day - and I'm having incredible burning, stabbing, electric shocks, and numbness. I've read a lot of posts in the neuropathy group of people taking low dose Naltrexone (between 1-5mg once a day) and having incredible results with it reducing all of those symptoms except for numbness. So I found a "compounding pharmacy" here in town and am picking up a 30-day supply later today ($55). My primary says he actually thinks this might work! It's worth a try, especially if it means I can quit taking Lyrica with all of its side effects! In my opinion, it's always good to ask questions and get second and third opinions if you have to. My brother always says, "Remember - doctors are 'practicing' medicine - they don't have all the answers." I guess that's true to a large extent. But with all of us in the "chronic pain" phase of neuropathy, it's good to have hope that there are doctors out there searching for ways to help us. I've also discovered on this 15-year journey that different things work for different people, whether it's medication, PT, exercise, topicals, and even surgeries. I wish all of us on this journey that seems to have no cure the very best. Keep searching and asking questions and sharing information. At least we can maybe help each other stay positive. God bless us all!

@heisenberg34
He did tell me I may improve in 2 to 3 years but I have documentation where he put on paper that I will deterioriate. But to your point Ive noticed that doors close with other doctors Im sent to once I mention neuropathy. So ive decided no more doctors appointments unless Im sent to the hospital or just dealing with my primary as I need medication refills.

Ive been told it isnt a death sentence but due to circumstances for me it actually is. I just wander if someone out there will listen (not online but in real life) but not looking that way. Sorry I do realize my posts turn into vents but its all I got.

Ive realized there is no point. My last appointment with the neurologist a few days ago was not even 15 mins. Told me not to worry about the large bump on my tendon above the foot I got from exercising which he told me to do. I dont feel pain. In fact told me he didnt need to see me again, not to worry and go live my life. Didnt get a chance to mention that its getting worse. I did get to hear him pat himself on the back like he cured me or actually did something while rushing me out of the office. Im sick of being told to stay positive and that Im on some kind of journey. Im not some kind of “insert illness” warrior. All terms that trivialize how serious this is. All I want is help that isnt there. To hell with this “journey” I see how it ends.

@heisenberg34
He did tell me I may improve in 2 to 3 years but I have documentation where he put on paper that I will deterioriate. But to your point Ive noticed that doors close with other doctors Im sent to once I mention neuropathy. So ive decided no more doctors appointments unless Im sent to the hospital or just dealing with my primary as I need medication refills.

Ive been told it isnt a death sentence but due to circumstances for me it actually is. I just wander if someone out there will listen (not online but in real life) but not looking that way. Sorry I do realize my posts turn into vents but its all I got.

@njed ~ Around 2010, perhaps earlier, I started noticing the feeling that my sock was wadded up under my left big toe joint. I started getting electrical-type sensations in my toes, and burning in the ball of my foot. My primary and podiatrist both termed it "metatarsalgia" and recommended nothing other than orthotics. It kept getting worse, progressing to my right foot. In 2017, I asked for a referral to a neurologist who had an MRI done which showed a mild disc bulge and possible pinched nerve somewhere around L4. He said it could be the cause of my "neuropathy", but because I had no back pain, he said there was no treatment for it.
We moved out of state in 2020, and my new primary referred me to a neurologist who also acted like I was wasting his time. He said I needed to be on Gabapentin and that he didn't need to see me further. I tried it at a low dose for a month and said "no thanks." My primary asked me to try Lyrica, and I thought I'd hit the jackpot! It worked for about 3 years and then I needed a bigger dose. I'm currently at 75mg 3 times a day - and I'm having incredible burning, stabbing, electric shocks, and numbness. I've read a lot of posts in the neuropathy group of people taking low dose Naltrexone (between 1-5mg once a day) and having incredible results with it reducing all of those symptoms except for numbness. So I found a "compounding pharmacy" here in town and am picking up a 30-day supply later today ($55). My primary says he actually thinks this might work! It's worth a try, especially if it means I can quit taking Lyrica with all of its side effects! In my opinion, it's always good to ask questions and get second and third opinions if you have to. My brother always says, "Remember - doctors are 'practicing' medicine - they don't have all the answers." I guess that's true to a large extent. But with all of us in the "chronic pain" phase of neuropathy, it's good to have hope that there are doctors out there searching for ways to help us. I've also discovered on this 15-year journey that different things work for different people, whether it's medication, PT, exercise, topicals, and even surgeries. I wish all of us on this journey that seems to have no cure the very best. Keep searching and asking questions and sharing information. At least we can maybe help each other stay positive. God bless us all!