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What type of specialist is the best type for Peripheal Neuropathy?

Posted by pkh3381 @pkh3381, Oct 5, 2023

What type of specialist is the best type for Peripheal Neuropathy? I have seen two neurologists, been referred to a Podiatrist, and not one has offered me help, or shown any interest. I will soon be seeing an Orthopedist about another problem and will ask him about PN. My PN is getting much worse, very quickly, and I need help. I realize there is no cure, but I also know that complications with the feet can lead to amputation if it goes too far, and I am getting very concerned.

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heisenberg34 | @heisenberg34 | Oct 13, 2023
In reply to @pkh3381 "Ok, thanks to your suggestion, I just submitted dialogue to the Mayo Office of Patient Experience!..." + (show)
@pkh3381

Ok, thanks to your suggestion, I just submitted dialogue to the Mayo Office of Patient Experience! I stated that I was not trying to get this Dr in trouble, but that the treatment I was getting is not acceptable. I told them about the two Drs that I found that I thought could help me and how their "self-referral" policy is failing patients. Especially since they are required to go back through their current Mayo Dr for a referral. I did tell them that I did submit a referral request on Sept 9, and that I am still waiting on a response. I also gave them details on the most recent failing performance by my Dr. I am not very hopeful that anything will come about from this, but we shall see. My Mayo experience has really been no different from the other experiences I have had with various other Drs, clinics and hospitals, and I reminded them that this is certainly not the kind of care that Mayo is currently advertising! I do have a GI appt with a PA on 10/19, so I did message him to remind me to ask for a referral to a PN specialist when I see him [because of my MCI, I may not remember]. I am not sure GI will want anything to do with this, but at least I am trying, right? Whatever......
P

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My buddy had all kinds of issues that docotor after doctor had no answer for. They kind of just brushed him off. He finallly went to the Cleveland Clinic where was treated with respect, time,
and deep concern. The team was able to pinpoint his problem and develop a treatment plan that finally gave him the relief he had been looking for.

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1 reply
bettyg81pain | @bettyg81pain | Oct 14, 2023
In reply to @heisenberg34 "You are welcome. I am glad that you may have found someone who can help. As..." + (show)
@heisenberg34

You are welcome. I am glad that you may have found someone who can help. As I have mentioned many times in this blog, I discovered early on that YOU have to be your own best advocate. Never stop looking, searching. Be persistent. What's the old saying? "The squeaky wheel gets the grease". So it is in the area of medicine.
Praying that you find THE ONE.

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Would you please share what he tells you!!

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golfgame | @golfgame | Oct 15, 2023
In reply to @heisenberg34 "A pain specialist is a good place to start. Find one who has a good amount..." + (show)
@heisenberg34

A pain specialist is a good place to start. Find one who has a good amount of experience. And, one who is empathetic to your situation. In the beginning of my neuropathy journey, I met with teo pain specialists who just blew me off, essentially saying "just learn to live with it". I learned early on that YOU have to become your own, best advocate. Unfortunately, a lot of docs are under the gun from the big wigs to get as many people in and out of the door as quickly as possibly. Avoid these peope! Again, you need someone who is willing and able to spend the necessary time with you.

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"I met with teo pain specialists who just blew me off, essentially saying "just learn to live with it".

I would have gotten up and left their office instantly!

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louise67 | @louise67 | Oct 17, 2023

I wasn't diagnosed until I saw a neurophysiologist. That's a neurologist who specializes in nerves that make the body move. I had to find him on my own; I got no help from PCP , a general neurologist, and Pain Management was a joke. Mine is treating sensory, motor, and autonomic idiopathic SFN. I also see some specialists about specific things. Another SFN patient told me about a GI Dr who understands SFN. It took 2 1/2 years to find my neurophysiologist. Please don't give up! Keep looking and don't take "I don't know" or "you don't have a problem" as the answer. Hoping you find someone soon

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3 replies
mack43 | @mack43 | Oct 17, 2023
In reply to @louise67 "I wasn't diagnosed until I saw a neurophysiologist. That's a neurologist who specializes in nerves that..." + (show)
@louise67

I wasn't diagnosed until I saw a neurophysiologist. That's a neurologist who specializes in nerves that make the body move. I had to find him on my own; I got no help from PCP , a general neurologist, and Pain Management was a joke. Mine is treating sensory, motor, and autonomic idiopathic SFN. I also see some specialists about specific things. Another SFN patient told me about a GI Dr who understands SFN. It took 2 1/2 years to find my neurophysiologist. Please don't give up! Keep looking and don't take "I don't know" or "you don't have a problem" as the answer. Hoping you find someone soon

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What specific treatments did your Neurophysiologist recommend? Thank you for your interesting post.

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1 reply
seidholz | @seidholz | Oct 18, 2023

Did he give you any treatment ideas? Mine is idiopathic and they basically said to learn to live with it

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heisenberg34 | @heisenberg34 | Oct 18, 2023

I've heard that mantra before. In most cases that's medicalese for "I don't have the time or interest to look any further into your case". If I had taken two orthopedists similar advice, I would likely be in either: a wheel chair, or, a nursing home. Don't give up! You have to become your own best advocate. There is someone out there who will be able to help you. Perhaps not completely, but at least to some degree.

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pkh3381 | @pkh3381 | Oct 18, 2023
In reply to @louise67 "I wasn't diagnosed until I saw a neurophysiologist. That's a neurologist who specializes in nerves that..." + (show)
@louise67

I wasn't diagnosed until I saw a neurophysiologist. That's a neurologist who specializes in nerves that make the body move. I had to find him on my own; I got no help from PCP , a general neurologist, and Pain Management was a joke. Mine is treating sensory, motor, and autonomic idiopathic SFN. I also see some specialists about specific things. Another SFN patient told me about a GI Dr who understands SFN. It took 2 1/2 years to find my neurophysiologist. Please don't give up! Keep looking and don't take "I don't know" or "you don't have a problem" as the answer. Hoping you find someone soon

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I am assuming your neurophysiologist is an MD? In my search, I have found that there are psychologists that advertise themselves as neurophysiologists. I would have hesitation going to anyone other than an MD for reasons of their ability to order labs, etc., and I am not sure they would be covered by Medicare, which is necessary for me.
P

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normale | @normale | Oct 18, 2023
In reply to @mack43 "What specific treatments did your Neurophysiologist recommend? Thank you for your interesting post." + (show)
@mack43

What specific treatments did your Neurophysiologist recommend? Thank you for your interesting post.

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In 1987 I was diagnosed with PN in my left foot by a neurologist and was told that "it would be progressive and there was nothing that would help.
I am 92 yrs old now. I barely notice any problem. Maybe the Gabapentin (Neurontin) has helped for MANY years.
I suggest that you check it out with your MD. Good luck. Shalom.

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adejuliannie | @adejuliannie | Oct 19, 2023

Neurologist an if You find one that understands Neuropathy.

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