Hi John,
Sure. Bilateral foot numbness and some tingling, no pain per se, no weakness, no balance issues.
I started the diagnostic journey thinking that it was possibly lumbar related given that a recent MRI showed 4 herniated discs. Nobody seems to care much about that. And maybe rightfully so given that my symptoms are bilateral.
No one thus far has suggested a peripheral artery disease test. But then again, PAD appears to have differing symptoms.
Thanks for the recommended links...I will check them out.
Bob
Hi Ray,
Any recommended treatment? The internet is the wild West of scientifically questionable stuff even from seemingly reputable sources. Everyone seems to
want to throw gabapentin at it... With weird dosages anywhere from 100 to 7,000 mg.
Regards,
Bob
Of course, I'm not in a position to recommend any treatments, but I can tell you what my neurologist recommended. His first suggestion was alpha-lipoic acid, two caps daily (I forget the dosage; possibly 600 mg?). A few months after trying the acid and getting no results, I told my neurologist that I'd read that alpha-lipoic acid was used chiefly to treat pain, and since I had no pain (only screwy balance), could I quit taking the acid? He suggested instead I try a "medicinal food" called EB-N5. I tried EB-N5 and have been taking it ever since. The one source of EB-N5 controversy for many is the product's inclusion in its formulation of a rather heavy dose of B6; too much of one strain of B6 (pyridoxine hydrochloride) can be toxic. Thus far, I'm not able to pronounce EB-N5 a miracle medicine, but as far as I can tell, it has done me no harm, and therefore, I'm willing to continue taking it, hoping in not too many more months I'll be able to report a few positive results.
I wish I had the answer to that question because I’m in the same boat as you.
Gabapentin did nothing for me,and I was on it for a few years, also was on most of the other meds they give out for neuropathy and they didn’t help either.
I also had infusions of IVIG for 8 months, and they didn’t help me either.
So now I’m at an impasse, as what’s next for me.
I’m just tired of being in pain in my feet daily..
They re numb and I have pins and needles in them.
Gets so bad I can hardly walk at times.
Of course, I'm not in a position to recommend any treatments, but I can tell you what my neurologist recommended. His first suggestion was alpha-lipoic acid, two caps daily (I forget the dosage; possibly 600 mg?). A few months after trying the acid and getting no results, I told my neurologist that I'd read that alpha-lipoic acid was used chiefly to treat pain, and since I had no pain (only screwy balance), could I quit taking the acid? He suggested instead I try a "medicinal food" called EB-N5. I tried EB-N5 and have been taking it ever since. The one source of EB-N5 controversy for many is the product's inclusion in its formulation of a rather heavy dose of B6; too much of one strain of B6 (pyridoxine hydrochloride) can be toxic. Thus far, I'm not able to pronounce EB-N5 a miracle medicine, but as far as I can tell, it has done me no harm, and therefore, I'm willing to continue taking it, hoping in not too many more months I'll be able to report a few positive results.
Hi Ray,
Seems so far based upon my research and yours as well, that medical science as it pertains to neuropathy has become akin to the
Italian chef throwing spaghetti against the wall to see what sticks.
Thanks for the two supplements you mentioned. I will look into them.
Although the science is questionable have
you tried a TENS device?
Bob
I wish I had the answer to that question because I’m in the same boat as you.
Gabapentin did nothing for me,and I was on it for a few years, also was on most of the other meds they give out for neuropathy and they didn’t help either.
I also had infusions of IVIG for 8 months, and they didn’t help me either.
So now I’m at an impasse, as what’s next for me.
I’m just tired of being in pain in my feet daily..
They re numb and I have pins and needles in them.
Gets so bad I can hardly walk at times.
"So now I’m at an impasse, as what’s next for me."
I hear that said so often, not by those recently diagnosed but by those who've searching for months and sometimes for years. Puzzlement is our stock in trade.
Earlier today, I mentioned in some post that I'm having a good deal of hip pain at the moment –– pain I'm chalking up to arthritis. But could it be some new manifestation of my PN? I don't know –– and who's to tell me, which one of my of my various specialists? After supper last evening I made a crudely drawn chart of my many doctors, with my PCP at the center and all the others circling round, pinwheel-like. I told my partner about my hip pain and that I thought I should talk to a doctor. But which one? Dr. V., the neurosurgeon? Dr. W., the neurologist? Dr. B., the physiatrist? Dr. M., the orthopedist? Or maybe I should talk to them all (which would take between Monday morning and Labor Day)? Some would say at least I've got all these specialists (and I am grateful for that).
But, at this moment, I, too, feel like I'm at something of an impasse.
Hi Ray,
Seems so far based upon my research and yours as well, that medical science as it pertains to neuropathy has become akin to the
Italian chef throwing spaghetti against the wall to see what sticks.
Thanks for the two supplements you mentioned. I will look into them.
Although the science is questionable have
you tried a TENS device?
Bob
Yes, I have used a TENS device. In fact, it's lying around here somewhere. I bought it years ago, years before I was diagnosed with PN, and I was going to weekly PT, where my therapist suggested I try a TENS device. But at the time, I was being treated for run-of-the-mill Old Guy Instability. My therapist, who was sincere and knowledgeable, knew little about PN (of course, neither did I at the time). Neither she nor I could figure out why I wasn't improving according to her Old Guy Balance Program timetable. She applied a TENS device to me. I bought one and used it at home. After many applications, with no measurable improvement, I gave p on the TENS device. That's why I say it's here somewhere, probably in the kitchen drawer along with SuperGlue and assorted old screws.
@justbob Bob, on the TENS unit, like Ray, mine is sitting in a box...somewhere. I was first diagnosed with PN in 2015 and while in PT around 2018, my physical therapist felt a TENS unit might help. He requested that my primary doc write a prescription for it so my insurance would cover the cost. I followed the instructions and after 10 days, it went into the box. No help. That's me, however, I suggest that each of us must explore any help possible because we all have different causes for our PN and who knows what might help. Ed
Hi Ray,
Thanks for getting back. Thus far, my "numb/no pain" feet (large fiber peripheral neuropathy) have drawn a diagnosis of diabetic neuropathy. The conclusion was fairly promptly reached based upon an EMG and a blood glucose test. However, given an A1C of just 6.0 (slightly pre-diabetic as are about 50% of the US population over 65), not at all overweight, cholesterol good, blood work so far ok, I am not yet convinced. Curiously, if one were to use the World Heath Organization's standard of 6.1 instead of the CDC's 5.7 as the beginning basis for pre-diabetes, I wouldn't qualify.
Maybe in denial, but I gotta be 110% convinced that the diagnosis is correct if I have to live with this forever. So, down the rabbit hole I go looking for answers that may never truly come. Given that they say there can be over 100 causes for neuropathy, it may surely be an insurmountable endeavor.
Regards.
Bob
Start looking at your blood relatives (siblings, father, grandfather) and see if there are any similar symptoms in the family. Somehow it makes me feel better recognizing that one of my sisters shares the same symptoms, even though she hasn’t seen a doctor for it.
@justbob Bob, on the TENS unit, like Ray, mine is sitting in a box...somewhere. I was first diagnosed with PN in 2015 and while in PT around 2018, my physical therapist felt a TENS unit might help. He requested that my primary doc write a prescription for it so my insurance would cover the cost. I followed the instructions and after 10 days, it went into the box. No help. That's me, however, I suggest that each of us must explore any help possible because we all have different causes for our PN and who knows what might help. Ed
"So now I’m at an impasse, as what’s next for me."
I hear that said so often, not by those recently diagnosed but by those who've searching for months and sometimes for years. Puzzlement is our stock in trade.
Earlier today, I mentioned in some post that I'm having a good deal of hip pain at the moment –– pain I'm chalking up to arthritis. But could it be some new manifestation of my PN? I don't know –– and who's to tell me, which one of my of my various specialists? After supper last evening I made a crudely drawn chart of my many doctors, with my PCP at the center and all the others circling round, pinwheel-like. I told my partner about my hip pain and that I thought I should talk to a doctor. But which one? Dr. V., the neurosurgeon? Dr. W., the neurologist? Dr. B., the physiatrist? Dr. M., the orthopedist? Or maybe I should talk to them all (which would take between Monday morning and Labor Day)? Some would say at least I've got all these specialists (and I am grateful for that).
But, at this moment, I, too, feel like I'm at something of an impasse.
Maybe one clue is that it’s not bilateral. My neuropathy pain is always bilateral, maybe one side worse than the other, but always both sides. So I vote ortho. Go get a good steroid injection!
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Hi John,
Sure. Bilateral foot numbness and some tingling, no pain per se, no weakness, no balance issues.
I started the diagnostic journey thinking that it was possibly lumbar related given that a recent MRI showed 4 herniated discs. Nobody seems to care much about that. And maybe rightfully so given that my symptoms are bilateral.
No one thus far has suggested a peripheral artery disease test. But then again, PAD appears to have differing symptoms.
Thanks for the recommended links...I will check them out.
Bob
-
Like -
Helpful -
Hug
3 ReactionsHi, Bob
Of course, I'm not in a position to recommend any treatments, but I can tell you what my neurologist recommended. His first suggestion was alpha-lipoic acid, two caps daily (I forget the dosage; possibly 600 mg?). A few months after trying the acid and getting no results, I told my neurologist that I'd read that alpha-lipoic acid was used chiefly to treat pain, and since I had no pain (only screwy balance), could I quit taking the acid? He suggested instead I try a "medicinal food" called EB-N5. I tried EB-N5 and have been taking it ever since. The one source of EB-N5 controversy for many is the product's inclusion in its formulation of a rather heavy dose of B6; too much of one strain of B6 (pyridoxine hydrochloride) can be toxic. Thus far, I'm not able to pronounce EB-N5 a miracle medicine, but as far as I can tell, it has done me no harm, and therefore, I'm willing to continue taking it, hoping in not too many more months I'll be able to report a few positive results.
Ray
-
Like -
Helpful -
Hug
1 ReactionI wish I had the answer to that question because I’m in the same boat as you.
Gabapentin did nothing for me,and I was on it for a few years, also was on most of the other meds they give out for neuropathy and they didn’t help either.
I also had infusions of IVIG for 8 months, and they didn’t help me either.
So now I’m at an impasse, as what’s next for me.
I’m just tired of being in pain in my feet daily..
They re numb and I have pins and needles in them.
Gets so bad I can hardly walk at times.
-
Like -
Helpful -
Hug
1 ReactionHi Ray,
Seems so far based upon my research and yours as well, that medical science as it pertains to neuropathy has become akin to the
Italian chef throwing spaghetti against the wall to see what sticks.
Thanks for the two supplements you mentioned. I will look into them.
Although the science is questionable have
you tried a TENS device?
Bob
-
Like -
Helpful -
Hug
1 Reaction"So now I’m at an impasse, as what’s next for me."
I hear that said so often, not by those recently diagnosed but by those who've searching for months and sometimes for years. Puzzlement is our stock in trade.
Earlier today, I mentioned in some post that I'm having a good deal of hip pain at the moment –– pain I'm chalking up to arthritis. But could it be some new manifestation of my PN? I don't know –– and who's to tell me, which one of my of my various specialists? After supper last evening I made a crudely drawn chart of my many doctors, with my PCP at the center and all the others circling round, pinwheel-like. I told my partner about my hip pain and that I thought I should talk to a doctor. But which one? Dr. V., the neurosurgeon? Dr. W., the neurologist? Dr. B., the physiatrist? Dr. M., the orthopedist? Or maybe I should talk to them all (which would take between Monday morning and Labor Day)? Some would say at least I've got all these specialists (and I am grateful for that).
But, at this moment, I, too, feel like I'm at something of an impasse.
Good ol' PN –– it's definitely a 6-ticket ride! 🙂
Ray (@ray666)
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Like -
Helpful -
Hug
3 ReactionsHi, Bob
Yes, I have used a TENS device. In fact, it's lying around here somewhere. I bought it years ago, years before I was diagnosed with PN, and I was going to weekly PT, where my therapist suggested I try a TENS device. But at the time, I was being treated for run-of-the-mill Old Guy Instability. My therapist, who was sincere and knowledgeable, knew little about PN (of course, neither did I at the time). Neither she nor I could figure out why I wasn't improving according to her Old Guy Balance Program timetable. She applied a TENS device to me. I bought one and used it at home. After many applications, with no measurable improvement, I gave p on the TENS device. That's why I say it's here somewhere, probably in the kitchen drawer along with SuperGlue and assorted old screws.
Ray
-
Like -
Helpful -
Hug
2 Reactions@justbob Bob, on the TENS unit, like Ray, mine is sitting in a box...somewhere. I was first diagnosed with PN in 2015 and while in PT around 2018, my physical therapist felt a TENS unit might help. He requested that my primary doc write a prescription for it so my insurance would cover the cost. I followed the instructions and after 10 days, it went into the box. No help. That's me, however, I suggest that each of us must explore any help possible because we all have different causes for our PN and who knows what might help. Ed
-
Like -
Helpful -
Hug
2 ReactionsStart looking at your blood relatives (siblings, father, grandfather) and see if there are any similar symptoms in the family. Somehow it makes me feel better recognizing that one of my sisters shares the same symptoms, even though she hasn’t seen a doctor for it.
-
Like -
Helpful -
Hug
4 ReactionsHow do I find out if I have neuropathy?
Maybe one clue is that it’s not bilateral. My neuropathy pain is always bilateral, maybe one side worse than the other, but always both sides. So I vote ortho. Go get a good steroid injection!
-
Like -
Helpful -
Hug
2 Reactions