Hello @nullz, Thank you for sharing your experience. I've also been diagnosed with idiopathic small fiber peripheral neuropathy but only have the numbness. I've been in the prediabetes category most of my adult life and it's only been the past few years after doing a lot of research that I've made lifestyle changes to try and help. I've also wondered about different causes and connections and started looking into the metabolic syndrome since I fall into that condition also.
It's really good to hear you've found an answer for your SFN. Hoping others read your story and benefit by your experience. Do you mind sharing what brought you to Connect, what you were searching for?
Thanks again for sharing some hope. That's actually the reason that brought me to Connect in 2016 after being diagosed with idiopathic SFPN at Mayo Rochester and my neurologist telling me the same thing that my primary care had told me after 20+ years of living with the numbness creeping from toes, to the bottom of the feet up into the ankles and then the legs which is when I started wanting to follow up for a diagnosis and see if I could find something that helped. I was in the dumper when the neurologist told me there was nothing that would help with the numbness and I started searching and found Connect. Reading experiences shared by other members has also given me some hope and helped me become a better advocate for my own health.
Not sure if you are into low carb healthy fat living but there is another discussion that has helped me that you might find helpful if you still fit the prediabetes category. I was always a prediabetic denier with my doctor because I frankly didn't understand it and didn't bother to learn more at the time. A little research went a long way to enlighten me and help with my weight loss at the same time.
If you haven't seen any videos by Dr. Jay Wortman, I think you might really like this one.
-- Dr. Jay Wortman - 'Undoing Atkins: A Cautionary Tale': https://www.youtube.com/watch?v=jIegMp5cWBY
One other bit of information that might be of interest. Apologies if this is old news. 🙂
Per a number of recent studies, it seems that post-meal blood glucose spikes are a better predictor of developing SFN than A1C or fasting glucose levels.
In other words, it's possible to have normal fasting glucose and "only" prediabetic A1C, but have post-meal glucose spikes high enough to lead to SFN. As such, relying solely on A1C and fasting glucose testing, as is common practice, can lead to missed signs of trouble.
FWIW, I've seen some studies/doctors advocating for a target post-meal glucose level < 140 to avoid SFN issues, which is lower than the standard guidelines.
One other bit of information that might be of interest. Apologies if this is old news. 🙂
Per a number of recent studies, it seems that post-meal blood glucose spikes are a better predictor of developing SFN than A1C or fasting glucose levels.
In other words, it's possible to have normal fasting glucose and "only" prediabetic A1C, but have post-meal glucose spikes high enough to lead to SFN. As such, relying solely on A1C and fasting glucose testing, as is common practice, can lead to missed signs of trouble.
FWIW, I've seen some studies/doctors advocating for a target post-meal glucose level < 140 to avoid SFN issues, which is lower than the standard guidelines.
I think that's why I've seen lot of information lately about the Keto Mojo - https://shop.keto-mojo.com/collections/all. Have been thinking about getting one to see if it will help with knowing when I'm overdoing it 🙂 Just don't like having to stick myself frequently.
I think that's why I've seen lot of information lately about the Keto Mojo - https://shop.keto-mojo.com/collections/all. Have been thinking about getting one to see if it will help with knowing when I'm overdoing it 🙂 Just don't like having to stick myself frequently.
Ha, that's funny; mine was delivered 3 days ago. I already test my glucose a couple times a day with a Contour Next One, but was interested in the ketone aspect of the Keto Mojo.
I find the Keto Mojo more difficult to use, and less consistent, than the Contour Next for glucose monitoring. The KM testing strips require a larger sample, and (partially due to their squared-off shape) seem less 'thirsty' than the Contour strips. The KM is also more expensive per test, and generates more waste due to the strips being individually wrapped in foil.
The ketone measuring is fine, but has the same issues with sample size and collection difficulty.
If you're not going to be sticking yourself daily, or are really keen on ketone monitoring, the KM is fine. But the collection difficulty and expense issues make other options better for daily glucose monitoring in my book.
Ha, that's funny; mine was delivered 3 days ago. I already test my glucose a couple times a day with a Contour Next One, but was interested in the ketone aspect of the Keto Mojo.
I find the Keto Mojo more difficult to use, and less consistent, than the Contour Next for glucose monitoring. The KM testing strips require a larger sample, and (partially due to their squared-off shape) seem less 'thirsty' than the Contour strips. The KM is also more expensive per test, and generates more waste due to the strips being individually wrapped in foil.
The ketone measuring is fine, but has the same issues with sample size and collection difficulty.
If you're not going to be sticking yourself daily, or are really keen on ketone monitoring, the KM is fine. But the collection difficulty and expense issues make other options better for daily glucose monitoring in my book.
I have Federal Blue Cross Blue Shield insurance and they have a free blood glucose monitoring system called LIVONGO. It is easy to use and it keeps a log of all your results and gives suggestions on improving your blood glucose levels.
One other bit of information that might be of interest. Apologies if this is old news. 🙂
Per a number of recent studies, it seems that post-meal blood glucose spikes are a better predictor of developing SFN than A1C or fasting glucose levels.
In other words, it's possible to have normal fasting glucose and "only" prediabetic A1C, but have post-meal glucose spikes high enough to lead to SFN. As such, relying solely on A1C and fasting glucose testing, as is common practice, can lead to missed signs of trouble.
FWIW, I've seen some studies/doctors advocating for a target post-meal glucose level < 140 to avoid SFN issues, which is lower than the standard guidelines.
Hi John, I was recently diagnosed my A1C is great and fasting but the last two physicals my 1 hour isn’t good…your the first person whose mentioned this as a possible cause for my SFN. I’m a celiac but I’ve been in complete control for over 12 years, so they didn’t know the cause. Are you simply suggesting low carb, high protein diet?
I think that's why I've seen lot of information lately about the Keto Mojo - https://shop.keto-mojo.com/collections/all. Have been thinking about getting one to see if it will help with knowing when I'm overdoing it 🙂 Just don't like having to stick myself frequently.
I just bought a glucometer (to prove my doctor wrong - haha - also a pre diabetes denier). I bought the very tiny lancets, and the little injection device. I can honestly say that I barely feel the stick.
Hi John, I was recently diagnosed my A1C is great and fasting but the last two physicals my 1 hour isn’t good…your the first person whose mentioned this as a possible cause for my SFN. I’m a celiac but I’ve been in complete control for over 12 years, so they didn’t know the cause. Are you simply suggesting low carb, high protein diet?
In any case, a low carb diet helped me a good deal. But of course everybody is different, so don't take my tale as a suggestion per se.
If anything, I would suggest that people suffering from idiopathic SFN who are "only" prediabetic, or have not been tested for insulin resistance, consider investigating the possibility that their SFN might be connected to irregular glucose processing.
Per the literature, there does seem to be a not-well-understood connection between SFN and abnormal glucose processing. However, in my experience, most doctors (and even my SFN specialists) don't seem to investigate the possibility of such a connection, probably due to the fact that SFN isn't typical with prediabetes.
I found an older anecdotal article on the subject today on jabfm.org. I can't yet post links, but it's:
Holland and Prodan, "Peripheral Neuropathy and “Borderline” Diabetes", Journal of the American Board of Family Practitioners, Vol 17, No 2. (March-April 2004), pp, 127-130.
It concludes, in part, "Based on the data available in the current medical literature, we suggest that patients presenting with unexplained painful sensory neuropathy should be evaluated for impaired glucose metabolism with a 2-hour OGTT".
In fact, here's the complete conclusion from the paper:
Based on the data available in the current medical literature, we suggest that patients presenting with
unexplained painful sensory neuropathy should be evaluated for impaired glucose metabolism with a
2-hour OGTT; if the results of the test are abnormal, they should be referred for lifestyle interventions and/or initiation of oral hypoglycemic agents in addition to management of neuropathy symptoms. Improved glycemic control can prevent the development of overt diabetes mellitus and may have some impact on progression of neuropathy in these cases. The association between “idiopathic” painful sensory neuropathy and impaired glucose metabolism argues very strongly for prospective studies in larger populations looking at the cost effectiveness of this approach."
In any case, a low carb diet helped me a good deal. But of course everybody is different, so don't take my tale as a suggestion per se.
If anything, I would suggest that people suffering from idiopathic SFN who are "only" prediabetic, or have not been tested for insulin resistance, consider investigating the possibility that their SFN might be connected to irregular glucose processing.
Per the literature, there does seem to be a not-well-understood connection between SFN and abnormal glucose processing. However, in my experience, most doctors (and even my SFN specialists) don't seem to investigate the possibility of such a connection, probably due to the fact that SFN isn't typical with prediabetes.
I found an older anecdotal article on the subject today on jabfm.org. I can't yet post links, but it's:
Holland and Prodan, "Peripheral Neuropathy and “Borderline” Diabetes", Journal of the American Board of Family Practitioners, Vol 17, No 2. (March-April 2004), pp, 127-130.
It concludes, in part, "Based on the data available in the current medical literature, we suggest that patients presenting with unexplained painful sensory neuropathy should be evaluated for impaired glucose metabolism with a 2-hour OGTT".
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Thank you again John. Your case is the closest to mine that I have found on this site.
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3 ReactionsOne other bit of information that might be of interest. Apologies if this is old news. 🙂
Per a number of recent studies, it seems that post-meal blood glucose spikes are a better predictor of developing SFN than A1C or fasting glucose levels.
In other words, it's possible to have normal fasting glucose and "only" prediabetic A1C, but have post-meal glucose spikes high enough to lead to SFN. As such, relying solely on A1C and fasting glucose testing, as is common practice, can lead to missed signs of trouble.
FWIW, I've seen some studies/doctors advocating for a target post-meal glucose level < 140 to avoid SFN issues, which is lower than the standard guidelines.
-
Like -
Helpful -
Hug
4 ReactionsI think that's why I've seen lot of information lately about the Keto Mojo - https://shop.keto-mojo.com/collections/all. Have been thinking about getting one to see if it will help with knowing when I'm overdoing it 🙂 Just don't like having to stick myself frequently.
-
Like -
Helpful -
Hug
2 ReactionsHa, that's funny; mine was delivered 3 days ago. I already test my glucose a couple times a day with a Contour Next One, but was interested in the ketone aspect of the Keto Mojo.
I find the Keto Mojo more difficult to use, and less consistent, than the Contour Next for glucose monitoring. The KM testing strips require a larger sample, and (partially due to their squared-off shape) seem less 'thirsty' than the Contour strips. The KM is also more expensive per test, and generates more waste due to the strips being individually wrapped in foil.
The ketone measuring is fine, but has the same issues with sample size and collection difficulty.
If you're not going to be sticking yourself daily, or are really keen on ketone monitoring, the KM is fine. But the collection difficulty and expense issues make other options better for daily glucose monitoring in my book.
-
Like -
Helpful -
Hug
2 ReactionsI have Federal Blue Cross Blue Shield insurance and they have a free blood glucose monitoring system called LIVONGO. It is easy to use and it keeps a log of all your results and gives suggestions on improving your blood glucose levels.
-
Like -
Helpful -
Hug
4 ReactionsHi John, I was recently diagnosed my A1C is great and fasting but the last two physicals my 1 hour isn’t good…your the first person whose mentioned this as a possible cause for my SFN. I’m a celiac but I’ve been in complete control for over 12 years, so they didn’t know the cause. Are you simply suggesting low carb, high protein diet?
-
Like -
Helpful -
Hug
2 ReactionsI just bought a glucometer (to prove my doctor wrong - haha - also a pre diabetes denier). I bought the very tiny lancets, and the little injection device. I can honestly say that I barely feel the stick.
-
Like -
Helpful -
Hug
3 Reactions(I think you were replying to my comment...?)
In any case, a low carb diet helped me a good deal. But of course everybody is different, so don't take my tale as a suggestion per se.
If anything, I would suggest that people suffering from idiopathic SFN who are "only" prediabetic, or have not been tested for insulin resistance, consider investigating the possibility that their SFN might be connected to irregular glucose processing.
Per the literature, there does seem to be a not-well-understood connection between SFN and abnormal glucose processing. However, in my experience, most doctors (and even my SFN specialists) don't seem to investigate the possibility of such a connection, probably due to the fact that SFN isn't typical with prediabetes.
I found an older anecdotal article on the subject today on jabfm.org. I can't yet post links, but it's:
Holland and Prodan, "Peripheral Neuropathy and “Borderline” Diabetes", Journal of the American Board of Family Practitioners, Vol 17, No 2. (March-April 2004), pp, 127-130.
It concludes, in part, "Based on the data available in the current medical literature, we suggest that patients presenting with unexplained painful sensory neuropathy should be evaluated for impaired glucose metabolism with a 2-hour OGTT".
-
Like -
Helpful -
Hug
5 ReactionsIn fact, here's the complete conclusion from the paper:
Based on the data available in the current medical literature, we suggest that patients presenting with
unexplained painful sensory neuropathy should be evaluated for impaired glucose metabolism with a
2-hour OGTT; if the results of the test are abnormal, they should be referred for lifestyle interventions and/or initiation of oral hypoglycemic agents in addition to management of neuropathy symptoms. Improved glycemic control can prevent the development of overt diabetes mellitus and may have some impact on progression of neuropathy in these cases. The association between “idiopathic” painful sensory neuropathy and impaired glucose metabolism argues very strongly for prospective studies in larger populations looking at the cost effectiveness of this approach."
-
Like -
Helpful -
Hug
4 Reactions@nullz - I thought I would share the link to the article for you since you are not yet able to post links as a new member.
-- Peripheral Neuropathy and “Borderline” Diabetes: https://www.jabfm.org/content/17/2/127
I noticed you joined July 25th and might now be able to post links. Have you tried posting any links lately?
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4 Reactions