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role of ongoing medical testing for idiopathic peripheral neuropathy
Neuropathy | Last Active: 36 minutes ago | Replies (10)Comment receiving replies
@badgerguy - Wow...what a topic and I'm sure you've raised some eyebrows today! I have idiopathic axonal sensory motor PN, diagnosed in 2015 with some minor symptoms prior to 11 years ago. In 2020 flew to Mayo in MN prior to covid and they did every test possible. I was anxious to rule out other serious potential issues. I will have this lousy PN for forever. Getting through that was difficult enough. After all, I went there to find out the cause and a "fix". They did not suggest any future testing and frankly, I didn't ask. And, as far as I'm concerned, I went to the best place available. They suggested physical therapy would help. So, is ongoing medical testing necessary? In my case, in my opinion, no. However, for some, the jury is out. Ed
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@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!