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Neuropathy | Last Active: May 27 9:02am | Replies (140)
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Hi John,
The only thing I got out of my first neurologist visit when I asked about my future was "PN kinda advances for10 years then stays about the same" . Has anyone else heard this?
Bless,
Rick
Replies to "Hi John, The only thing I got out of my first neurologist visit when I asked..."
I have had peripheral neuropathy for 16 years and it keeps getting worse. That’s what I was told would happen.
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Hi Rick, I heard a variation of what you were told 🙂 I've only seen the neurologist who diagnosed me with idiopathic small fiber PN and since I have no pain but only numbness, he basically told me there were no drugs that help the numbness and to let him know if and when it gets worse. This is actually what started my journey to learn as much as I can about my condition and any possible treatments that might help. The funny part is that I avoided seeking a diagnosis for 20+ years until the numbness progressed to just below the knees. I had discussed the numbness with several PCPs over the years and they all said there were tests they can run to determine if the cause is nerve damage but when I asked if it is nerve damage what can you do, the answer was always nothing. So I really wasn't surprised when I finally wanted to know and then had the tests and was diagnosed. I pretty much got the same answer from the neurologist.
I started my search and found Connect and my learning journey began. I also found the Minnesota Neuropathy Association and regularly attended meetings until they finally had to disband. What really got me to look into cellular nutrition as a possible answer for my condition was reading the story of Dr. Terry Wahls - https://terrywahls.com/about/about-terry-wahls/.
I shared my neuropathy story in another discussion here https://connect.mayoclinic.org/comment/310341/ and I think so far I've been able to slow or possible stop the progression of my neuropathy. At least it doesn't seem to be any worse than when I was diagnosed in 2016 and it's actually a little better since it feels like the numbness is primarily in my feet and just above the ankles and not just below the knees. I haven't bothered to have any more tests to confirm if it's gotten better so it's subjective on my part.
I'm currently trying to learn a little more about the metabolic syndrome and how it can affect many different conditions as I think it seems like I fit the criteria and I had always been labeled with prediabetes by my primary care docs.