Peripheral neuropathy query

[CrazyCatLady2693]

Hi, wondering if anyone can help me.. I am in my mid 30s, diagnosed 6 years ago (possible LADA, but being treated as type 2, with Metformin) and have recently been having some issues that sound like peripheral neuropathy, more specifically sensory neuropathy. My diabetes is under control (HbA1c 39 a couple of weeks ago) so this is confusing my doctor. I do have pernicious anaemia so he checked my B12 levels (have an injection every 12 weeks) and that also came back fine. It's really frustrating to know something isn't right but tests don't reflect that!

The pain/discomfort fluctuates but it has been consistently in one place (down the side of my big toe) but it can be tingly, numb, can't feel temperature, it's definitely worse at night and the sensitivity scale is through the roof - having a very light blanket on it at times is actually painful, the pain feels like it's going right down to my bone. My GP said it could just be nerve damage from an injury but I don't think I've hurt my foot and this has been getting progressively worse for about 6 months. I'm starting to get a twinge in the other foot, in exactly the same place, down the side of the big toe. I'm doubting it's injury related but my diabetes and B12 levels are under control so I'm not sure what could be causing this?

If anyone has any thoughts or suggestions I'd love to hear them! Thank you in advance

 

[KennyA]

Hi, wondering if anyone can help me.. I am in my mid 30s, diagnosed 6 years ago (possible LADA, but being treated as type 2, with Metformin) and have recently been having some issues that sound like peripheral neuropathy, more specifically sensory neuropathy. My diabetes is under control (HbA1c 39 a couple of weeks ago) so this is confusing my doctor. I do have pernicious anaemia so he checked my B12 levels (have an injection every 12 weeks) and that also came back fine. It's really frustrating to know something isn't right but tests don't reflect that!

The pain/discomfort fluctuates but it has been consistently in one place (down the side of my big toe) but it can be tingly, numb, can't feel temperature, it's definitely worse at night and the sensitivity scale is through the roof - having a very light blanket on it at times is actually painful, the pain feels like it's going right down to my bone. My GP said it could just be nerve damage from an injury but I don't think I've hurt my foot and this has been getting progressively worse for about 6 months. I'm starting to get a twinge in the other foot, in exactly the same place, down the side of the big toe. I'm doubting it's injury related but my diabetes and B12 levels are under control so I'm not sure what could be causing this?

If anyone has any thoughts or suggestions I'd love to hear them! Thank you in advance

Hi CrazyCatLady2693

Neuropathy is one of those things about the diabetic experience - everyone knows it's common, they know what causes it, but there doesn't seem to be very much official understanding of why people experience different sorts of neuropathy and what can be done about it. I usually refer to the Bilous and Donnelly "Handbook of Diabetes" which is good at describing neuropathy and its consequences, but pretty poor at suggesting what you (or a doc) can do about it. It's full of things like "the natural history of painful neuropathy is unclear" and "...few [treatments] have been subjected to well-designed randomised controlled trials".

Reducing blood glucose levels worked for me, really quickly. My neuropathy started while my A1c was 44 and I had it for about five or six years. Incidentally, at this time I was being told I wasn't diabetic despite the number of diabetic symptoms I had. I took naproxen for the pain.

While the pain has long gone, I do still have a residual tingle which is probably permanent, but definitely nowhere on a pain scale.

The other thing that occurs that you might want to check is gout. I have had this as well, alongside neuropathy pain, and found it very difficult to work out whuich was which. A full-blown gout attack, once it develops properly, is much worse than neuropathy, bad as that is.

 

[CrazyCatLady2693]

Hi CrazyCatLady2693

Neuropathy is one of those things about the diabetic experience - everyone knows it's common, they know what causes it, but there doesn't seem to be very much official understanding of why people experience different sorts of neuropathy and what can be done about it. I usually refer to the Bilous and Donnelly "Handbook of Diabetes" which is good at describing neuropathy and its consequences, but pretty poor at suggesting what you (or a doc) can do about it. It's full of things like "the natural history of painful neuropathy is unclear" and "...few [treatments] have been subjected to well-designed randomised controlled trials".

Reducing blood glucose levels worked for me, really quickly. My neuropathy started while my A1c was 44 and I had it for about five or six years. Incidentally, at this time I was being told I wasn't diabetic despite the number of diabetic symptoms I had. I took naproxen for the pain.

While the pain has long gone, I do still have a residual tingle which is probably permanent, but definitely nowhere on a pain scale.

The other thing that occurs that you might want to check is gout. I have had this as well, alongside neuropathy pain, and found it very difficult to work out whuich was which. A full-blown gout attack, once it develops properly, is much worse than neuropathy, bad as that is.

Thanks very much for your reply
I've had a look into gout and although some of it fits, I don't have swelling or any redness, or anything obvious really from looking at my foot. I also wouldn't be able to take naproxen unfortunately because of interactions with meds for other conditions. My recent number was 39 so I'm a bit frustrated in one way it wasn't worse, or my B12 levels weren't lower, because that would at least make sense! My doctor mentioned the possibility of it being nerve damage from an injury but that doesn't sit right with me because of how it presents. I just don't know if there's any point going back because in their eyes they've done the appropriate tests ‍

Hi CrazyCatLady2693

Neuropathy is one of those things about the diabetic experience - everyone knows it's common, they know what causes it, but there doesn't seem to be very much official understanding of why people experience different sorts of neuropathy and what can be done about it. I usually refer to the Bilous and Donnelly "Handbook of Diabetes" which is good at describing neuropathy and its consequences, but pretty poor at suggesting what you (or a doc) can do about it. It's full of things like "the natural history of painful neuropathy is unclear" and "...few [treatments] have been subjected to well-designed randomised controlled trials".

Reducing blood glucose levels worked for me, really quickly. My neuropathy started while my A1c was 44 and I had it for about five or six years. Incidentally, at this time I was being told I wasn't diabetic despite the number of diabetic symptoms I had. I took naproxen for the pain.

While the pain has long gone, I do still have a residual tingle which is probably permanent, but definitely nowhere on a pain scale.

The other thing that occurs that you might want to check is gout. I have had this as well, alongside neuropathy pain, and found it very difficult to work out whuich was which. A full-blown gout attack, once it develops properly, is much worse than neuropathy, bad as that is.

Thanks very much for your reply

I've had a look into gout and although some of it fits, I don't have swelling or any redness, or anything obvious really from looking at my foot. I also wouldn't be able to take naproxen unfortunately because of interactions with meds for other conditions. My recent number was 39 so I'm a bit frustrated in one way it wasn't worse, or my B12 levels weren't lower, because that would at least make sense! My doctor mentioned the possibility of it being nerve damage from an injury but that doesn't sit right with me because of how it presents. I just don't know if there's any point going back because in their eyes they've done the appropriate tests ‍

 

[AndBreathe]

@CrazyCatLady2693 - does your pain vary over the days and weeks? Does it exhibit anything that might be a cycle?

When you had your B12 tested, how long had it been since your last injection? Do you have tests prior to each injection, or just periodically?

Do you know what your B12 result actually was, and what the considered normal assay ranges were from your lab?

Have you had any form scan on your foot?

Sorry about all the questions.

 

[Brettskee]

Hi I have severe peripheral neuropathy both legs and feet and also both hands and arms also effects swallowing digesting food can cause all sorts of problems pls go ask to see a specialist as does generally start in big toe I take a cream called capsaicin it definitely works for the sharp stabbing pains in your toes and feet if you can get hold of this cream just be careful not to touch your nose or eyes after applying hope you get sorted

 

[CrazyCatLady2693]

Hi I have severe peripheral neuropathy both legs and feet and also both hands and arms also effects swallowing digesting food can cause all sorts of problems pls go ask to see a specialist as does generally start in big toe I take a cream called capsaicin it definitely works for the sharp stabbing pains in your toes and feet if you can get hold of this cream just be careful not to touch your nose or eyes after applying hope you get sorted

I'm so sorry to hear you have it so badly! I have an annual review next month so I'm going to talk about this again then I've decided.