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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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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@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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And, what does a Pain Specialist do for PN? I am on Gabapentin for the pain.
P

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I would do an internet search in your area, you might have to travel, for a neurologist that treats PN. I have been with my neurologist for a few years and he has helped as much as he can. There is not one treatment that works for everyone. You and your neurologist have to be willing to try different medications that work for you.
Good luck and don't give up.

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@pkh3381

And, what does a Pain Specialist do for PN? I am on Gabapentin for the pain.
P

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I sttarted with a good neurologist who prescribed, the gabapentin, plus diazepam (generic valium), diclofenac K, in adition to the tramadoI was already. That cocktail of drugs helped immensely for a while. I was then recommended by a pain specialist to have a trial of a spinal cord stimulator. Those all worked together to give me excellent pain mitigation for about 3 years.

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@heisenberg34

I sttarted with a good neurologist who prescribed, the gabapentin, plus diazepam (generic valium), diclofenac K, in adition to the tramadoI was already. That cocktail of drugs helped immensely for a while. I was then recommended by a pain specialist to have a trial of a spinal cord stimulator. Those all worked together to give me excellent pain mitigation for about 3 years.

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Thank you for the good information. I have an involuntary neurological body movemednt and I have to be careful of too much pain med because then I fall! It is hard to find and keep a good balance [no pun intended! LOL!]. I will read about the spinal cord stimulator. Again, thanks!
❣️P

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@heisenberg34

I sttarted with a good neurologist who prescribed, the gabapentin, plus diazepam (generic valium), diclofenac K, in adition to the tramadoI was already. That cocktail of drugs helped immensely for a while. I was then recommended by a pain specialist to have a trial of a spinal cord stimulator. Those all worked together to give me excellent pain mitigation for about 3 years.

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I am excited! I found a specialist at Phoenix Mayo [near me & I am a patient there] and I have requested an appt. She does the spinal cord stimulation, along with what appears to be many other specific treatments for PN! I am not sure why I was never referred to her for help, but no matter if I can just get in to her [and soon, hopefully]. I don't know why I was not able to find her before, but??? You inspired me, so thank you!
❣️P

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Well, once again, my hopes were dashed by Mayo! I completed the extensive info online under this Dr's profile, including all the personal info, mayo clinic #, description of what I needed to be seen for, etc., etc., for an appt with her, and waited for a callback. I don't even know why they have you do all that because what they refer to as "self referral", which I have run into so many times, technically does not exist! I don't even know why they use the term! Bottom line, I can't even begin to get the process started to get into this Dr until I get a referral from a Mayo Dr. To be blunt, my main Dr, a neurologist, could care less about me. I requested [9/9] a neuro referral from him for all the neuro conditions I have that are not currently being followed because everything is a specialty now, plus an order for a new neuro-psych exam for the Mayo Habit Program, and I am still waiting on a response. This guy is a real case. Because of him, I got so frustrated and angry the last time I had dealt with him that I canceled all my upcoming appts with Mayo and vowed I would never go back to Mayo, just because of him. So, to ask him for another referral is a big laugh! I just feel defeated. I have tried being my own strong advocate, but they can beat you down! I apologize for the venting, but that is just what I need right now. I will have to calm down before I figure out how to proceed....... I'm sorry.
P

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@pkh3381

Well, once again, my hopes were dashed by Mayo! I completed the extensive info online under this Dr's profile, including all the personal info, mayo clinic #, description of what I needed to be seen for, etc., etc., for an appt with her, and waited for a callback. I don't even know why they have you do all that because what they refer to as "self referral", which I have run into so many times, technically does not exist! I don't even know why they use the term! Bottom line, I can't even begin to get the process started to get into this Dr until I get a referral from a Mayo Dr. To be blunt, my main Dr, a neurologist, could care less about me. I requested [9/9] a neuro referral from him for all the neuro conditions I have that are not currently being followed because everything is a specialty now, plus an order for a new neuro-psych exam for the Mayo Habit Program, and I am still waiting on a response. This guy is a real case. Because of him, I got so frustrated and angry the last time I had dealt with him that I canceled all my upcoming appts with Mayo and vowed I would never go back to Mayo, just because of him. So, to ask him for another referral is a big laugh! I just feel defeated. I have tried being my own strong advocate, but they can beat you down! I apologize for the venting, but that is just what I need right now. I will have to calm down before I figure out how to proceed....... I'm sorry.
P

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Hi @pkh3381. I am sorry to hear about your experience and the frustration you are experiencing. I suggest reaching out to the Office of Patient Experience:

Mayo Clinic Office of Patient Experience
Phone: 844-544-0036 (toll free)
Email: opx@mayo.edu
https://www.mayoclinic.org/about-mayo-clinic/patient-experience

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@JustinMcClanahan

Hi @pkh3381. I am sorry to hear about your experience and the frustration you are experiencing. I suggest reaching out to the Office of Patient Experience:

Mayo Clinic Office of Patient Experience
Phone: 844-544-0036 (toll free)
Email: opx@mayo.edu
https://www.mayoclinic.org/about-mayo-clinic/patient-experience

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Thank you. I don't want to cause problems for the Dr, but I keep giving him chances and he doesn't come through. I would tell someone else to contact the Office of Patient Experience, but I don't know for myself. I keep thinking I probably made it worse when I spoke up to him about it. My initial disillusionment with him was when I contacted him thru the portal about a Rx that he had increased which affected my neurological body movement. I had been referred to him for this condition and seen him for a year and a half and his response was, "what body movement would that be?"! Then, he referred to it as "dizziness", which I explained to him for the umpteenth time that it is not dizziness that I feel, and referred to a Dx of BPPV, which he had never mentioned before to me, and which I know is not the Dx for this condition. I have had this before, a couple of times, and I know those symptoms. The final thing was a test result for a test he had ordered through Mayo, that came back as High. I checked on previous results that were that same result and higher, that Mayo Lab did not indicate as High. I contacted him and asked him if the reference range had changed for this test? He replied to me to contact the Rheumatologist he had referred me to at a previous time. I presented the same facts to the Rheumatologist, and he told me I would need to contact the Dr who ordered the test! I was so frustrated and angry that I made my voice heard to the Dr and then canceled all my upcoming appts with Mayo, vowing never to return, knowing now that was an overreaction. I have posted on Connect that I think so many problems with Drs today is that they are overburdoned with the number of patients, so how do I then "report him" if this is the case? I don't know.......

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@pkh3381

Thank you. I don't want to cause problems for the Dr, but I keep giving him chances and he doesn't come through. I would tell someone else to contact the Office of Patient Experience, but I don't know for myself. I keep thinking I probably made it worse when I spoke up to him about it. My initial disillusionment with him was when I contacted him thru the portal about a Rx that he had increased which affected my neurological body movement. I had been referred to him for this condition and seen him for a year and a half and his response was, "what body movement would that be?"! Then, he referred to it as "dizziness", which I explained to him for the umpteenth time that it is not dizziness that I feel, and referred to a Dx of BPPV, which he had never mentioned before to me, and which I know is not the Dx for this condition. I have had this before, a couple of times, and I know those symptoms. The final thing was a test result for a test he had ordered through Mayo, that came back as High. I checked on previous results that were that same result and higher, that Mayo Lab did not indicate as High. I contacted him and asked him if the reference range had changed for this test? He replied to me to contact the Rheumatologist he had referred me to at a previous time. I presented the same facts to the Rheumatologist, and he told me I would need to contact the Dr who ordered the test! I was so frustrated and angry that I made my voice heard to the Dr and then canceled all my upcoming appts with Mayo, vowing never to return, knowing now that was an overreaction. I have posted on Connect that I think so many problems with Drs today is that they are overburdoned with the number of patients, so how do I then "report him" if this is the case? I don't know.......

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There is a widespread shortage of specialists, and hospitals, clinics, etc. really like big profits. Gone are the days of local practitioners who own their own shops and practice with a non-profit hospital. They cared so much they were on call (or someone covering for them) 24/7. Those days are gone; it seems the big institutions are hopeless, and many are for-profit corporations.

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