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
I'm guessing you might be in the pre-diabetic category like myself. You might want to read up on the metabolic syndrome which could be a factor. Here's some info I found after some long discussions with my doctor about not having diabetes and not buying into pre-diabetic diagnosis without an explanation which I never got from my doctors prior to being diagnosed with neuropathy.
Welcome @amer123, Sorry to hear that the Gabapentin isn't helping the neuropathy. It sounds like the neuropathy symptoms are related to your cancer treatments. I'm wondering if you might find the following discussion helpful:
--- Chemotherapy-induced neuropathy: What helps get rid of it?: https://connect.mayoclinic.org/discussion/chemotherapy-induced-neuropathy/
Have you talked to your care team about the Gabapentin not helping and any alternatives that might help?
If you drink alchohol....STOP!! and read up on the drugs they give you.They are not God!! I have refused 3 this year alone.When i call prescibing Dr and tell them the script made it worse,they just say"ok,quit taking them".
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
At my second-to-last neuropathy appointment, I was invited to take a simple cotton-swab genetic test. That's because I had mentioned in passing that my brother (now deceased) had had some form of neuropathy. However, the results of my cotton-swab test came back negative, negative, too insignificant to tell, inconclusive, negative, negative. It's a rabbit hole, all right.
Hi Ray, I have the same issues with idiopathic PN. Numbness, tingling, however the worse is balance!! I also must be very careful. My dr. had me on amitrtaline which after 4 months and nothing different except 8lbs heavier, I stopped taking it. It is mainly for pain, which I do not have. I have a vibrating platform, which has a handle(like a scooter) and I also bought slippers with the red light therapy, I exercise -4 days a week. With everyrthing combined I believe I am holding this numbness at and tingling from worsening. The balance has improved with the red light therapy. I have had 3 MRIs on spine and seeing a neurosurgeon to see if PN can be stemming from back, which I under
stand alot of this idiopathic PN stems from. We shall see. Keep posting any relief and balance issues if improving. Good luck to you.
I've got a similar situation: I'm aware of numbness, but mostly because my first EMG told me I had numbness. Until then, all I knew was my balance was wonky—and getting wonkier every month. Nowadays, apprised of my numbness (in the soles of my feet), I pay attention to it, particularly when driving, making sure before I shove the shift into forward or reverse that I have a good solid purchase of the pedals.
If I bump into any personal, positive breakthroughs, I'll be sure to let you know!
I'm guessing you might be in the pre-diabetic category like myself. You might want to read up on the metabolic syndrome which could be a factor. Here's some info I found after some long discussions with my doctor about not having diabetes and not buying into pre-diabetic diagnosis without an explanation which I never got from my doctors prior to being diagnosed with neuropathy.
Thanks John,
The only metabolic syndrome criteria out of the five mentioned is slightly pre-diabetic with an A1C of 6.0 (fasting glucose 103-110 range). My BMI is 22, triglycerides, total cholesterol, HDL, LDL are in normal range. I do take BP med that keeps it in the 120's/80ish. Thyroid good, B12 ok.
I may be wrong, but I don't seem to strongly fit the profile so to speak of someone diagnosed with "diabetic" neuropathy.
So before I have to change my dietary habits, ie, no more chocolate cake, I need to try my best to make sure. And since I'm brand new to this, I'm still exploring what other tests there are, what of the supposed 100 neuropathy causes can be ruled out and potential treatments. There is a plethora of wild scientifically unsubstantiated information out there regarding treatment...from red light therapy to TENs units, to vitamin supplements, and of course the old standby, gabapentin. As prevalent as neuropathy seems to be, you would think that science would have gotten a better handle on it by now.
Thanks,
Bob
At my second-to-last neuropathy appointment, I was invited to take a simple cotton-swab genetic test. That's because I had mentioned in passing that my brother (now deceased) had had some form of neuropathy. However, the results of my cotton-swab test came back negative, negative, too insignificant to tell, inconclusive, negative, negative. It's a rabbit hole, all right.
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
Thanks John,
The only metabolic syndrome criteria out of the five mentioned is slightly pre-diabetic with an A1C of 6.0 (fasting glucose 103-110 range). My BMI is 22, triglycerides, total cholesterol, HDL, LDL are in normal range. I do take BP med that keeps it in the 120's/80ish. Thyroid good, B12 ok.
I may be wrong, but I don't seem to strongly fit the profile so to speak of someone diagnosed with "diabetic" neuropathy.
So before I have to change my dietary habits, ie, no more chocolate cake, I need to try my best to make sure. And since I'm brand new to this, I'm still exploring what other tests there are, what of the supposed 100 neuropathy causes can be ruled out and potential treatments. There is a plethora of wild scientifically unsubstantiated information out there regarding treatment...from red light therapy to TENs units, to vitamin supplements, and of course the old standby, gabapentin. As prevalent as neuropathy seems to be, you would think that science would have gotten a better handle on it by now.
Thanks,
Bob
It's great to see that you are doing your own research and asking a lot of questions. We definitely need to be our own advocate when it comes to having neuropathy (or any health condition).
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I'm guessing you might be in the pre-diabetic category like myself. You might want to read up on the metabolic syndrome which could be a factor. Here's some info I found after some long discussions with my doctor about not having diabetes and not buying into pre-diabetic diagnosis without an explanation which I never got from my doctors prior to being diagnosed with neuropathy.
--- The metabolic syndrome – What is it and how should it be managed?
https://journals.sagepub.com/doi/full/10.1177/2047487319886404
--- The Metabolic Syndrome and Neuropathy: Therapeutic Challenges and Opportunities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881591/
--- Metabolic syndrome as a risk factor for neurological disorders
https://pubmed.ncbi.nlm.nih.gov/21997383/
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2 ReactionsI'm taking Gabapentin I don't think it's working, been 2 months now, my neuropathy is bad, I had rectal cancer, what should I do, need help?
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4 ReactionsWelcome @amer123, Sorry to hear that the Gabapentin isn't helping the neuropathy. It sounds like the neuropathy symptoms are related to your cancer treatments. I'm wondering if you might find the following discussion helpful:
--- Chemotherapy-induced neuropathy: What helps get rid of it?: https://connect.mayoclinic.org/discussion/chemotherapy-induced-neuropathy/
Have you talked to your care team about the Gabapentin not helping and any alternatives that might help?
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1 ReactionDuloxitene and Amidarone and Eloquis are the drugs along with alchohol that i quit and now walking again...js
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1 ReactionHi, Bob
At my second-to-last neuropathy appointment, I was invited to take a simple cotton-swab genetic test. That's because I had mentioned in passing that my brother (now deceased) had had some form of neuropathy. However, the results of my cotton-swab test came back negative, negative, too insignificant to tell, inconclusive, negative, negative. It's a rabbit hole, all right.
Ray
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2 ReactionsHi, Allegheny
I've got a similar situation: I'm aware of numbness, but mostly because my first EMG told me I had numbness. Until then, all I knew was my balance was wonky—and getting wonkier every month. Nowadays, apprised of my numbness (in the soles of my feet), I pay attention to it, particularly when driving, making sure before I shove the shift into forward or reverse that I have a good solid purchase of the pedals.
If I bump into any personal, positive breakthroughs, I'll be sure to let you know!
Cheers!
Ray (@ray666)
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3 ReactionsThanks John,
The only metabolic syndrome criteria out of the five mentioned is slightly pre-diabetic with an A1C of 6.0 (fasting glucose 103-110 range). My BMI is 22, triglycerides, total cholesterol, HDL, LDL are in normal range. I do take BP med that keeps it in the 120's/80ish. Thyroid good, B12 ok.
I may be wrong, but I don't seem to strongly fit the profile so to speak of someone diagnosed with "diabetic" neuropathy.
So before I have to change my dietary habits, ie, no more chocolate cake, I need to try my best to make sure. And since I'm brand new to this, I'm still exploring what other tests there are, what of the supposed 100 neuropathy causes can be ruled out and potential treatments. There is a plethora of wild scientifically unsubstantiated information out there regarding treatment...from red light therapy to TENs units, to vitamin supplements, and of course the old standby, gabapentin. As prevalent as neuropathy seems to be, you would think that science would have gotten a better handle on it by now.
Thanks,
Bob
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Helpful -
Hug
2 ReactionsHi 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
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1 ReactionThey have told me to keep taking Gabapentin it's been 2 M and it's still early.
It's great to see that you are doing your own research and asking a lot of questions. We definitely need to be our own advocate when it comes to having neuropathy (or any health condition).
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4 Reactions