Intriguing question. None of my doctors has ever pointed a finger of blame at any of my meds, none that I'm taking now nor in the past. Only one raised eyebrow: the heavy drinking I did 30+ years ago. I look forward to reading what others have to say.
Hi Ray - I tend to listen carefully when I go to a doctor, and you'll notice they use words used like .... perhaps, it could be, there is a slight reason to believe, might be and so on. Unless they have scientific proof, data like a written report, IF they say anything, it is more speculation. The good old raising of the eyebrow is another one of those hmmm....perhaps. My gut feeling is that many meds we are prescribed throughout our life might cause a lot of the idiopathic cases. PN can show up years after taking a med. Damage to nerves is not necessarily immediate which would account for the many idiopathic cases. Doctors are afraid to say this med is the cause of your PN. After all, they can't without proof. Heavy drinking? Perhaps and perhaps not. I think it is a coin flipper. After all, there are over 100 other causes and factors that can cause PN. Have a good day and keep moving. Ed
@chemist1
Good morning,
My doctors also believe my neuropathy was caused by seizure meds. I took Dilantin, Phenobarbital, Mysoline, Depakote and Zarontin.
Would you share what meds doctors believe caused your neuropathy?
Take care,
Jake
Hi Ray - I tend to listen carefully when I go to a doctor, and you'll notice they use words used like .... perhaps, it could be, there is a slight reason to believe, might be and so on. Unless they have scientific proof, data like a written report, IF they say anything, it is more speculation. The good old raising of the eyebrow is another one of those hmmm....perhaps. My gut feeling is that many meds we are prescribed throughout our life might cause a lot of the idiopathic cases. PN can show up years after taking a med. Damage to nerves is not necessarily immediate which would account for the many idiopathic cases. Doctors are afraid to say this med is the cause of your PN. After all, they can't without proof. Heavy drinking? Perhaps and perhaps not. I think it is a coin flipper. After all, there are over 100 other causes and factors that can cause PN. Have a good day and keep moving. Ed
Hi, Ed. It's great to be talking to you again. I'd mentioned my past heavy drinking in my reply to Jake only because it had come up in conversation with one of my neurologist's MA's. As she called it, the evidence of drinking that had gone on more than 30 years ago had shown up on a recent brain MRI (part of an early look-see into what might have caused my PN), but even the MA said, "Naw, there's very little chance the drinking had anything to do with it." So I've dismissed any thought I might have had that drinking was the culprit. These days, I accept: idiopathic means idiopathic. (A secret? I know I mustn't say this, but I enjoyed my drinking days! … until I stopped enjoying them, and thank goodness I did stop enjoying them. I feel the same way about my years of long-distance running. I have a friend who loves telling how "bad" running is for the body. Bad? So, okay. Bad it may be. But I damn sure enjoyed my running days while they lasted! Now, PN, that's another story … 🙂 ) Take care, Ed. As I said at the top, it's great to be talking to you again! ––Ray
I have been putting up with NP for years and now at age 93 my right leg is worse. A doctor gave me 2 shots for water on the knee and pain but only lasted less than a month and too expensive to continue. Sitting in my recliner takes away the pain, also a Tylenol helps when needed, and chair exercises. I blame it on all the hiking I used to do since I've never heard of a cause, or a cure and doctors avoid talking much about it, so I just sit in my recliner and think about the good old days. Martha
I have been putting up with NP for years and now at age 93 my right leg is worse. A doctor gave me 2 shots for water on the knee and pain but only lasted less than a month and too expensive to continue. Sitting in my recliner takes away the pain, also a Tylenol helps when needed, and chair exercises. I blame it on all the hiking I used to do since I've never heard of a cause, or a cure and doctors avoid talking much about it, so I just sit in my recliner and think about the good old days. Martha
Hi I have had peripheral. NeuropThy for about 4 years. It seemed to come from nowhere it was just there. I have been looking for a place to connect with others who have the same problem to see what works for them and mAybe I can help some one else.<br />
<br />
I was just diagnosed with PN. For me, it also came out of the blue. I am an athlete and back in February started experiencing excruciating pain in my left left from the back of the knee, down the outside of the leg into the ankle and foot. At it's worst I was barely able to lift my leg due to some loss of mobility. There were days the pain was so bad, I would be in tears on the way home from the gym. No matter what direction I tried to rest my leg, I was in pain.
Over time, it has gotten better. I've been working with Innovative Movement & Sports Medicine for many years so she knows me and my physical ability well. Since this started, she has done cupping, scraping, dry needling, stretching, rolling on lacrosse balls, etc. I also use a topical rub with CBD in it.
My pain and mobility has improved since February, however it's not gone. I finally had an EMG done last week and got the diagnosis of PN after seeing MULTIPLE doctors, none of whom seemed to care enough to even schedule follow-ups. I think that has been the worst of my experience.
I am not diabetic and also drink alcohol very rarely, so am able to rule those causes out. I am hoping to get to the underlying cause and then work from there so I can get back to doing the hard core workouts I've always loved.
I am following threads here to see what others are experiencing and trying to work through/live with PN.
Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.
How long have you been dealing with peripheral neuropathy?
I was just diagnosed with PN. For me, it also came out of the blue. I am an athlete and back in February started experiencing excruciating pain in my left left from the back of the knee, down the outside of the leg into the ankle and foot. At it's worst I was barely able to lift my leg due to some loss of mobility. There were days the pain was so bad, I would be in tears on the way home from the gym. No matter what direction I tried to rest my leg, I was in pain.
Over time, it has gotten better. I've been working with Innovative Movement & Sports Medicine for many years so she knows me and my physical ability well. Since this started, she has done cupping, scraping, dry needling, stretching, rolling on lacrosse balls, etc. I also use a topical rub with CBD in it.
My pain and mobility has improved since February, however it's not gone. I finally had an EMG done last week and got the diagnosis of PN after seeing MULTIPLE doctors, none of whom seemed to care enough to even schedule follow-ups. I think that has been the worst of my experience.
I am not diabetic and also drink alcohol very rarely, so am able to rule those causes out. I am hoping to get to the underlying cause and then work from there so I can get back to doing the hard core workouts I've always loved.
I am following threads here to see what others are experiencing and trying to work through/live with PN.
" … none of whom seemed to care enough to even schedule follow-ups."
That's especially infuriating, @gaelas. You'd think a 3-, 6-month, or 1-year follow-up would be the least of extended care.
I do know "the look," however, when a doctor is at loss as to what to do next. I've seen it the eyes of my doctors. I saw it in the eyes of the doctor who administered my first EMG and pronounced my condition as "idiopathic peripheral neuropathy." (I've since refined that diagnosis to CIAP, or chronic idiopathic axonal polyneuropathy).
I remember that afternoon in his office: late on a rainy Friday's afternoon, how, with the results of my EMG in his hand, he walked not toward me but away, to stand looking out at the rain for what seemed to me hours but was I'm sure not even a full minute, before turning back and giving me my diagnosis. That was the first time I saw "the look" in a doctor's eyes, the look of What do we do next?
Unlike your doctors, he and I did do a follow-up, only one in-person, but since then by phone. He'll adjust my medication by phone, depending upon how I tell him I'm doing. He's salvaged his reputation in my eyes. We may not do "real" follow-ups, but at least he makes me feel that he's still there for me.
I have peripheral neuropathy in fingertips and toes from good old chemo. There are so many different claims out there. My thought is just try sone B12.
I do not have pain . Just numbness
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Hi Ray - I tend to listen carefully when I go to a doctor, and you'll notice they use words used like .... perhaps, it could be, there is a slight reason to believe, might be and so on. Unless they have scientific proof, data like a written report, IF they say anything, it is more speculation. The good old raising of the eyebrow is another one of those hmmm....perhaps. My gut feeling is that many meds we are prescribed throughout our life might cause a lot of the idiopathic cases. PN can show up years after taking a med. Damage to nerves is not necessarily immediate which would account for the many idiopathic cases. Doctors are afraid to say this med is the cause of your PN. After all, they can't without proof. Heavy drinking? Perhaps and perhaps not. I think it is a coin flipper. After all, there are over 100 other causes and factors that can cause PN. Have a good day and keep moving. Ed
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1 ReactionHi Jake!
Dilantin, probably. But back in the early 2000s, there was little else.
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1 Reaction@chemist1
Yeah, more than likely the Dilantin. Even fewer drugs in the 60’s!
Giving away my age👴
Take care,
Jake
Hi, Ed. It's great to be talking to you again. I'd mentioned my past heavy drinking in my reply to Jake only because it had come up in conversation with one of my neurologist's MA's. As she called it, the evidence of drinking that had gone on more than 30 years ago had shown up on a recent brain MRI (part of an early look-see into what might have caused my PN), but even the MA said, "Naw, there's very little chance the drinking had anything to do with it." So I've dismissed any thought I might have had that drinking was the culprit. These days, I accept: idiopathic means idiopathic. (A secret? I know I mustn't say this, but I enjoyed my drinking days! … until I stopped enjoying them, and thank goodness I did stop enjoying them. I feel the same way about my years of long-distance running. I have a friend who loves telling how "bad" running is for the body. Bad? So, okay. Bad it may be. But I damn sure enjoyed my running days while they lasted! Now, PN, that's another story … 🙂 ) Take care, Ed. As I said at the top, it's great to be talking to you again! ––Ray
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1 ReactionI have been putting up with NP for years and now at age 93 my right leg is worse. A doctor gave me 2 shots for water on the knee and pain but only lasted less than a month and too expensive to continue. Sitting in my recliner takes away the pain, also a Tylenol helps when needed, and chair exercises. I blame it on all the hiking I used to do since I've never heard of a cause, or a cure and doctors avoid talking much about it, so I just sit in my recliner and think about the good old days. Martha
I'm only 87 but sometimes I sits and thinks, sometimes I just sits.
I was just diagnosed with PN. For me, it also came out of the blue. I am an athlete and back in February started experiencing excruciating pain in my left left from the back of the knee, down the outside of the leg into the ankle and foot. At it's worst I was barely able to lift my leg due to some loss of mobility. There were days the pain was so bad, I would be in tears on the way home from the gym. No matter what direction I tried to rest my leg, I was in pain.
Over time, it has gotten better. I've been working with Innovative Movement & Sports Medicine for many years so she knows me and my physical ability well. Since this started, she has done cupping, scraping, dry needling, stretching, rolling on lacrosse balls, etc. I also use a topical rub with CBD in it.
My pain and mobility has improved since February, however it's not gone. I finally had an EMG done last week and got the diagnosis of PN after seeing MULTIPLE doctors, none of whom seemed to care enough to even schedule follow-ups. I think that has been the worst of my experience.
I am not diabetic and also drink alcohol very rarely, so am able to rule those causes out. I am hoping to get to the underlying cause and then work from there so I can get back to doing the hard core workouts I've always loved.
I am following threads here to see what others are experiencing and trying to work through/live with PN.
25 years from a spinal cord injury
" … none of whom seemed to care enough to even schedule follow-ups."
That's especially infuriating, @gaelas. You'd think a 3-, 6-month, or 1-year follow-up would be the least of extended care.
I do know "the look," however, when a doctor is at loss as to what to do next. I've seen it the eyes of my doctors. I saw it in the eyes of the doctor who administered my first EMG and pronounced my condition as "idiopathic peripheral neuropathy." (I've since refined that diagnosis to CIAP, or chronic idiopathic axonal polyneuropathy).
I remember that afternoon in his office: late on a rainy Friday's afternoon, how, with the results of my EMG in his hand, he walked not toward me but away, to stand looking out at the rain for what seemed to me hours but was I'm sure not even a full minute, before turning back and giving me my diagnosis. That was the first time I saw "the look" in a doctor's eyes, the look of What do we do next?
Unlike your doctors, he and I did do a follow-up, only one in-person, but since then by phone. He'll adjust my medication by phone, depending upon how I tell him I'm doing. He's salvaged his reputation in my eyes. We may not do "real" follow-ups, but at least he makes me feel that he's still there for me.
I wish you all the best, @gaelas
Ray (@ray666)
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2 ReactionsI have peripheral neuropathy in fingertips and toes from good old chemo. There are so many different claims out there. My thought is just try sone B12.
I do not have pain . Just numbness
Any suggestions fir numbness?