Small fiber neuropathy /autonomic neuropathy doctor in Missouri

Posted by kdallen @kdallen, Nov 28, 2022

I am trying to locate a small fiber neuropathy or autonomic neuropathy doctor in Missouri. Does anyone have a Missouri doctor they can recommend? Thank you.

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Hello @kdallen, I don't know a specific neurologist in Missouri but I think you might want to look into one of the teaching hospitals located in Missouri and check with them. Here's a list that might be a good start until someone with experience in Missouri can share a neurologist name with you.

— Best Hospitals for Neurology & Neurosurgery in Missouri:
https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgery/missouri

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Yes, I have looked at many of those. I typically cannot get past the nurse practitioner. My Small Fiber Neuropathy has progressed to Autonomic Neuropathy. I see a once a year Neuro at Wash U, but communication is difficult. I am tired of feeling like I’m not just falling between the cracks, but I’m in the crack and no one even notices. My saving grace is my excellent GP. I need a neurologist that has an interest in SFN and Autonomic Neuropathy and who is willing to provide follow through more than once a year. I am very frustrated and very discouraged.

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@kdallen

Yes, I have looked at many of those. I typically cannot get past the nurse practitioner. My Small Fiber Neuropathy has progressed to Autonomic Neuropathy. I see a once a year Neuro at Wash U, but communication is difficult. I am tired of feeling like I’m not just falling between the cracks, but I’m in the crack and no one even notices. My saving grace is my excellent GP. I need a neurologist that has an interest in SFN and Autonomic Neuropathy and who is willing to provide follow through more than once a year. I am very frustrated and very discouraged.

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I can understand being discouraged, especially when there really is no cure for neuropathy, only treatments for the symptoms. When I was diagnosed with idiopathic small fiber peripheral neuropathy after it had progressed for 20+ years and I finally decided I needed to know what the diagnosis is, my Mayo neurologist told me there is nothing that will help with the numbness and tingling which are the only symptoms I had. He just said to let them know if it gets worse and sent me on my way. That's when I started searching and found Connect. I started doing my own research until I found something that helps me. If you like to do your own research, Google Scholar (https://scholar.google.com/) finds a lot of the latest medical research which I found helpful.

I also found the following two sites useful, in case you haven't seen them:
— Neuropathy Commons: https://neuropathycommons.org/
— Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

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@johnbishop

I can understand being discouraged, especially when there really is no cure for neuropathy, only treatments for the symptoms. When I was diagnosed with idiopathic small fiber peripheral neuropathy after it had progressed for 20+ years and I finally decided I needed to know what the diagnosis is, my Mayo neurologist told me there is nothing that will help with the numbness and tingling which are the only symptoms I had. He just said to let them know if it gets worse and sent me on my way. That's when I started searching and found Connect. I started doing my own research until I found something that helps me. If you like to do your own research, Google Scholar (https://scholar.google.com/) finds a lot of the latest medical research which I found helpful.

I also found the following two sites useful, in case you haven't seen them:
— Neuropathy Commons: https://neuropathycommons.org/
— Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

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John–thank you so much for the google scholar link! When I started seeing a local physiatrist 16 months ago, after a vertebral artery dissection and stroke, he wanted to do an EMG to try and explain my symptoms. When I asked him if the results would direct him to a direction for my treatment different from gabapentin and anti-depressants, he said they would not. I decided not to bother with EMG. I have now seen a neurologist at UCSF (I live far away in Montana) who has scheduled an EMG on me there on 12.22, because he said it would give a definitive diagnosis of neuropathy…which he does not think I have according to clinical presentation. My new physiatrist here tells me that is cannot definitively rule out neuropathy, and even if it could, treatment options don't change. So, I am wondering why I am getting this??!! Any thoughts??? Thanks.

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@rebsue

John–thank you so much for the google scholar link! When I started seeing a local physiatrist 16 months ago, after a vertebral artery dissection and stroke, he wanted to do an EMG to try and explain my symptoms. When I asked him if the results would direct him to a direction for my treatment different from gabapentin and anti-depressants, he said they would not. I decided not to bother with EMG. I have now seen a neurologist at UCSF (I live far away in Montana) who has scheduled an EMG on me there on 12.22, because he said it would give a definitive diagnosis of neuropathy…which he does not think I have according to clinical presentation. My new physiatrist here tells me that is cannot definitively rule out neuropathy, and even if it could, treatment options don't change. So, I am wondering why I am getting this??!! Any thoughts??? Thanks.

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Hi Rebecca @rebsue, I wished I had a good answer for you but I went through the same process myself trying to figure out if I did something to cause my neuropathy. I posted my story in another discussion here – https://connect.mayoclinic.org/comment/310341/.

Back a few years I was at a meeting for the Minnesota Neuropathy Association and had the opportunity to listen to a group of neurologists speak. One was an 80 year old neurologist still practicing and doing research at the University of Minnesota. Each of the 3 speakers had given a bunch of statistics on how many people are affected by neuropathy. He was the last of the 3 to talk and made us laugh when he said something like – contrary to what you've heard from my colleagues, if you live long enough, you will get neuropathy – nerves die the same as other cells in your body and when the nerve dies you get neuropathy. That really got me thinking towards, OK nerves eventually die but what can I do to make them healthier and my search was on.

I'm not sure if you have seen the list of treatments on the Foundation for Peripheral Neuropathy's website but they also include complementary and alternative treatments which might be helpful — https://www.foundationforpn.org/treatments/.

Hoping you have a pain free day.

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@johnbishop

Hi Rebecca @rebsue, I wished I had a good answer for you but I went through the same process myself trying to figure out if I did something to cause my neuropathy. I posted my story in another discussion here – https://connect.mayoclinic.org/comment/310341/.

Back a few years I was at a meeting for the Minnesota Neuropathy Association and had the opportunity to listen to a group of neurologists speak. One was an 80 year old neurologist still practicing and doing research at the University of Minnesota. Each of the 3 speakers had given a bunch of statistics on how many people are affected by neuropathy. He was the last of the 3 to talk and made us laugh when he said something like – contrary to what you've heard from my colleagues, if you live long enough, you will get neuropathy – nerves die the same as other cells in your body and when the nerve dies you get neuropathy. That really got me thinking towards, OK nerves eventually die but what can I do to make them healthier and my search was on.

I'm not sure if you have seen the list of treatments on the Foundation for Peripheral Neuropathy's website but they also include complementary and alternative treatments which might be helpful — https://www.foundationforpn.org/treatments/.

Hoping you have a pain free day.

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John–thank you so much for your reply. I love what the 80 year old neurologist had to say about neuropathy! I am 75, and before my stroke, I was one of those big hikers/runners who never had a pill in their life, so this is a huge adjustment for me to learn to live in a new way. I have been so reluctant to take medications–the side effects are often just a new problem. I've been experimenting with CBD and THC, and think that approach has some merit for moving the pain into the background a bit. Sigh…I have much to learn and so appreciate people sharing on this site.

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