@user* I've been thinking about no one being able to think of a dr who has been helpful to them - and - there must be so many kinds of PN, so many causes, there must be equally as many treatments, and to find the one that works for a particular individual might be like looking for the proverbial needle in haystack? or, perhaps as many have said - there is no treatment!!! You do have to be your own advocate - keep looking, trying new things, sharing what you have learned and what others have learned.
Continue looking is a good thing, sometimes we lose hope but you got to keep looking, something that might give you a little relief could be in the next comment that you read.
Keep trying!
I also am not diabetic, but have severe polyneuropathy that is autoimmune related. With research, I found a good neurologist who paid attention, and worked on the IVIG treatment that was available to me. Good luck in finding a doctor to fit your needs.
@pattiposky1930
Your doctor is mistaken. Many of us have Peripheral Neuropathy and are not diabetic.
If you have been having pain for 15 years, and no numbness I would guess that it’s not Neuropathy. I’m not a doctor, however I have had neuropathy for almost 10 years. Pain with numbness are the hallmarks of the disease.
Could your pain be caused by arthritis ?
Praying is absolutely the best way to handle the pain. Psalm 121 is my comfort.
Thank you for your response. I have also questioned the idea of neuropathy. I have a Dr appt next Tuesday - not with my regular Dr. Hope to get some answers. I don't have arthritis - Thankfully.
You can have peripheral neuropathy and NOT have diabetes. My blood sugar tests are all normal. However, every neurologist I've been to, all ask me if I'm a diabetic because of my symptoms. And to Jake @jakedduck1 my balance is getting worse as well, I'd say that it is now my single largest problem and I do experience other sensations similar to you. As my numbness increased from knees to toes, the quality of my balance decreased. I am finding walking on uneven surfaces requires walking with a cane. If you can, remain active as much as possible, I do some walking every day. Ed
I have had problems with having cold feet for years. I've never gotten anywhere about it with my regular Dr other than her putting her stethoscope on the veins in my feet and saying it's not a circulation problem. As I have gotten older, it has gotten much worse. I really don't know who to see about this as I have been to a foot doctor and he seems to pass it off. One of my friends has Neuropathy and thinks it could be that. I am having hip replacement surgery July 15th and have ignored my feet problems, but once I get better, I will have to find someone who can at least figure out what is going on. I now am cold from my knee's down. I keep the house temp. at 81 and still cold all the time. It does help to wear warm clothing and tennis shoes with socks, but I am in central Florida with rather hot weather ---I'm still cold. Maybe it's my age. I am 85. Any suggestions on what Dr. I should see??
@SusanEllen66
I've had Neuropathy for at least 35 years and I think its been 38 years but whatever it is my numbness didn't come until many years later. All the various horrible pain sensations and limited ability to walk very far. As my Neuropathy progressed the pain diminished and even went away and was replaced by numbness. My Neuropathy is stage 4 and permanent. Although it continues to progress. I now have bladder, bowel, ED, worse balance problems, diminished lack of sensation from my waist down and increasing muscle weakness but physical therapy helps with that.
Take care,
Jake
Jake’s experience with neuropathy is nearly identical to my own. My problems originated as painful feet during my last year and one half of military service, which at the time was a laugh, since, who has ever heard of an active duty, U.S. Navy Fleet Marine who didn’t complain of sore feet? Although both feet were painful, military orthopedists felt that a screw in my ankle, planted after a previous fracture, now healed, might be contributing to the situation. He attempted to remove the screw, was unable to do so and placed me on pain killers for the remainder of my enlistment and upon honorable discharge after four years active service, was awarded a 20 percent VA disability rating, approximately $120/month. During the year after discharge, the pain started to leave my feet but seemed to travel upward, more of a pinching type pain in my thighs and lower abdomen. I also started to experience constipation, some bladder leakage and intermittent ED. I attributed a lot of this with stress associated with re-acquainting myself with “normal’ civilian life. At this point, I’m around twenty-one years old and married (we’re currently at fifty plus years!), whom has noticed the changes in me that even I have not seen. Before service, I was an expert horseman, skier, long distance bicyclist, etc., but have mostly abandoned these. I came to realize that I unknowingly avoided these because of balance issues I was experiencing, but had learned to accommodate for by avoiding the sports I previously loved. After another six months, I was left almost entirely pain free, but numb from the bottoms of my feet to my knees, numb inner thighs, numbness in fingers and palms of hands, both buttocks, numbness in both shoulders and left side of my face. There was now also a ringing in both of my ears and have developed a severe limp, along with a tendency to trip over my own feet.
Of course, I visited neurologists, through all of this, who insisted on pain medications, even though in reality, I wasn’t in any real pain, and have mostly . They performed nerve conduction studies, several surgical exploratory explorations including carpal tunnel releases to both hands, numerous physical therapy visits and massage therapy all to no avail.
So what was happening and for what reason? I was not, and to this day, do not smoke, no alcohol, no drugs or wacky weed, no diabetes, no hypertension, all of my hematologies and blood chemistries were, and to this day, normal. At that point, I grew philosophical and settled into living my life. My focus was on the fact that I’m alive and will make this work, so I stopped looking for causes and focused on accommodating my shortcomings; until a day in 2015 that I ran across an obscure, previously unknown to me situation regarding the extremely critical circumstances regarding efforts to clean up the toxic water situation on the U.S Marine Corps base at Camp Lejeune, North Carolina, a duty station in which I served during my enlistment 55 years earlier. It seems that between the years of 1953-1987, heavy leakage of toxic chemical solvents and volatile organic compounds had contaminated Camp Lejeune’s drinking and bath in water, in amounts as much as 400 times permitted by the FDA! Among the conditions listed as a result of such exposures to anyone exposed 30 days or longer, were numerous cancers, as well as neurological conditions, including neuropathies, Parkinson’s Disease and ALS! To tell you the truth, even though the PACT Act, signed into law during 2022, admitted to a service connection to approximately 13 conditions, at this point, for many of those affected by those exposures, either through death or decline, had mostly stopped caring about causes long ago…
It may have been the worst drug I’ve ever taken. I felt like a zombie for four days after just one dose. The only thing good about it is that you don’t need more than one to realize if it’s not for you!
@sassymama3
Good morning,
I have never experienced the cold feelings like you describe. But I do get cold easily.
My Neuropathy was caused by many years of taking the seizure medicine Dilantin. When I first developed symptoms of Neuropathy I went to see a Podiatrist whom I liked very much, He was very honest telling me it is incurable but there was a chance medication might help. I accepted my condition so I never bothered hunting for vitamins He prescribed gabapentin for me in hopes that it would help the Neuropathy symptoms as well as helping my seizures, unfortunately, it had no effect whatsoever, even though I was taking the maximum daily dose of 3,600 mg. There was another man there with neuropathy, but he didn't receive any relief until he was taking the dose of 7,200 mg per day. research has shown that people who don't get relief from gabapentin is because they're not taking a high enough dose. I regret not trying higher doses than 3,600 mg. of Gabapentin.
After seeing my Podiatrist I asked my Neurologist about my feet and he agreed with the Podiatrist.
Take care,
Jake
You can have peripheral neuropathy and NOT have diabetes. My blood sugar tests are all normal. However, every neurologist I've been to, all ask me if I'm a diabetic because of my symptoms. And to Jake @jakedduck1 my balance is getting worse as well, I'd say that it is now my single largest problem and I do experience other sensations similar to you. As my numbness increased from knees to toes, the quality of my balance decreased. I am finding walking on uneven surfaces requires walking with a cane. If you can, remain active as much as possible, I do some walking every day. Ed
Ed: Sounds like my problem, I walk everyday and do balance exercises which really help. Have a professional show you which ones r best: Keep moving and loose all the weight u can without starving yourself:
Don’t give up !! Jett
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Continue looking is a good thing, sometimes we lose hope but you got to keep looking, something that might give you a little relief could be in the next comment that you read.
Keep trying!
I also am not diabetic, but have severe polyneuropathy that is autoimmune related. With research, I found a good neurologist who paid attention, and worked on the IVIG treatment that was available to me. Good luck in finding a doctor to fit your needs.
Thank you for your response. I have also questioned the idea of neuropathy. I have a Dr appt next Tuesday - not with my regular Dr. Hope to get some answers. I don't have arthritis - Thankfully.
You can have peripheral neuropathy and NOT have diabetes. My blood sugar tests are all normal. However, every neurologist I've been to, all ask me if I'm a diabetic because of my symptoms. And to Jake @jakedduck1 my balance is getting worse as well, I'd say that it is now my single largest problem and I do experience other sensations similar to you. As my numbness increased from knees to toes, the quality of my balance decreased. I am finding walking on uneven surfaces requires walking with a cane. If you can, remain active as much as possible, I do some walking every day. Ed
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4 ReactionsI have had problems with having cold feet for years. I've never gotten anywhere about it with my regular Dr other than her putting her stethoscope on the veins in my feet and saying it's not a circulation problem. As I have gotten older, it has gotten much worse. I really don't know who to see about this as I have been to a foot doctor and he seems to pass it off. One of my friends has Neuropathy and thinks it could be that. I am having hip replacement surgery July 15th and have ignored my feet problems, but once I get better, I will have to find someone who can at least figure out what is going on. I now am cold from my knee's down. I keep the house temp. at 81 and still cold all the time. It does help to wear warm clothing and tennis shoes with socks, but I am in central Florida with rather hot weather ---I'm still cold. Maybe it's my age. I am 85. Any suggestions on what Dr. I should see??
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1 ReactionI am not diabetic and have Neuropathy. My symptoms are generally tingling in the toes. I don't have any pain and numbness is minor.
Jake’s experience with neuropathy is nearly identical to my own. My problems originated as painful feet during my last year and one half of military service, which at the time was a laugh, since, who has ever heard of an active duty, U.S. Navy Fleet Marine who didn’t complain of sore feet? Although both feet were painful, military orthopedists felt that a screw in my ankle, planted after a previous fracture, now healed, might be contributing to the situation. He attempted to remove the screw, was unable to do so and placed me on pain killers for the remainder of my enlistment and upon honorable discharge after four years active service, was awarded a 20 percent VA disability rating, approximately $120/month. During the year after discharge, the pain started to leave my feet but seemed to travel upward, more of a pinching type pain in my thighs and lower abdomen. I also started to experience constipation, some bladder leakage and intermittent ED. I attributed a lot of this with stress associated with re-acquainting myself with “normal’ civilian life. At this point, I’m around twenty-one years old and married (we’re currently at fifty plus years!), whom has noticed the changes in me that even I have not seen. Before service, I was an expert horseman, skier, long distance bicyclist, etc., but have mostly abandoned these. I came to realize that I unknowingly avoided these because of balance issues I was experiencing, but had learned to accommodate for by avoiding the sports I previously loved. After another six months, I was left almost entirely pain free, but numb from the bottoms of my feet to my knees, numb inner thighs, numbness in fingers and palms of hands, both buttocks, numbness in both shoulders and left side of my face. There was now also a ringing in both of my ears and have developed a severe limp, along with a tendency to trip over my own feet.
Of course, I visited neurologists, through all of this, who insisted on pain medications, even though in reality, I wasn’t in any real pain, and have mostly . They performed nerve conduction studies, several surgical exploratory explorations including carpal tunnel releases to both hands, numerous physical therapy visits and massage therapy all to no avail.
So what was happening and for what reason? I was not, and to this day, do not smoke, no alcohol, no drugs or wacky weed, no diabetes, no hypertension, all of my hematologies and blood chemistries were, and to this day, normal. At that point, I grew philosophical and settled into living my life. My focus was on the fact that I’m alive and will make this work, so I stopped looking for causes and focused on accommodating my shortcomings; until a day in 2015 that I ran across an obscure, previously unknown to me situation regarding the extremely critical circumstances regarding efforts to clean up the toxic water situation on the U.S Marine Corps base at Camp Lejeune, North Carolina, a duty station in which I served during my enlistment 55 years earlier. It seems that between the years of 1953-1987, heavy leakage of toxic chemical solvents and volatile organic compounds had contaminated Camp Lejeune’s drinking and bath in water, in amounts as much as 400 times permitted by the FDA! Among the conditions listed as a result of such exposures to anyone exposed 30 days or longer, were numerous cancers, as well as neurological conditions, including neuropathies, Parkinson’s Disease and ALS! To tell you the truth, even though the PACT Act, signed into law during 2022, admitted to a service connection to approximately 13 conditions, at this point, for many of those affected by those exposures, either through death or decline, had mostly stopped caring about causes long ago…
We’re Blessed,
Ken Hassen; July, 2024
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3 ReactionsI totally agree.
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2 Reactions@sassymama3
Good morning,
I have never experienced the cold feelings like you describe. But I do get cold easily.
My Neuropathy was caused by many years of taking the seizure medicine Dilantin. When I first developed symptoms of Neuropathy I went to see a Podiatrist whom I liked very much, He was very honest telling me it is incurable but there was a chance medication might help. I accepted my condition so I never bothered hunting for vitamins He prescribed gabapentin for me in hopes that it would help the Neuropathy symptoms as well as helping my seizures, unfortunately, it had no effect whatsoever, even though I was taking the maximum daily dose of 3,600 mg. There was another man there with neuropathy, but he didn't receive any relief until he was taking the dose of 7,200 mg per day. research has shown that people who don't get relief from gabapentin is because they're not taking a high enough dose. I regret not trying higher doses than 3,600 mg. of Gabapentin.
After seeing my Podiatrist I asked my Neurologist about my feet and he agreed with the Podiatrist.
Take care,
Jake
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Helpful -
Hug
1 ReactionEd: Sounds like my problem, I walk everyday and do balance exercises which really help. Have a professional show you which ones r best: Keep moving and loose all the weight u can without starving yourself:
Don’t give up !! Jett
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Hug
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