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Peripheral neuropathy worsened

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AJLang

AJLang

Well-Known Member
Relationship to Diabetes
Type 1
I saw my NHS podiatrist today and when she did the vibration test on both feet she was very concerned about how much worse the results were compared to the last three years. She even got a second machine to double check.
They are now both down to 20 in each foot (from 12/14 a year ago) and the pulse was very weak in my right foot. She said that there is nothing I can do and that the worsening may not be caused by the diabetes.
 
Thank you Grovesy and Jenny.
My diabetic consultant is great but I've never contacted her outside of appointments. However after finding this out about the neuropathy today I've emailed her to see if she has any advice hoping that she might signpost me in the right direction.
 
sorry to hear this, bit of a blow after your good bloods results, Hugs from me too.
 
Never had my tootsies checked with a machine - only just a normal tuning fork, so you say as soon as you can feel it and then when you stop feeling it - hence have no way of interpreting the readings - presumably they indicate your reactions were slower than before.
 
Thank you Silentsquirrel x
 
trophywench said:
Never had my tootsies checked with a machine - only just a normal tuning fork, so you say as soon as you can feel it and then when you stop feeling it - hence have no way of interpreting the readings - presumably they indicate your reactions were slower than before.
Click to expand...
Yes Jenny with the machine they press a probe (?) against your big toe and turn a dial up on the electronic machine and you say once you can feel the vibration and the machine gives a number for that. So they tested the big toe on each foot twice and each time it gave exactly the same reading of 20. Then she tried another machine with exactly the same result.
The longer it takes for you to feel the vibration the worse your feeling.
So mine was something like 6/8 in 2018
12/14 in 2020
20/20 now
I asked what a really bad reading would be and she said 25
 
Same principle but just more refined then, Amanda.
 
trophywench said:
Same principle but just more refined then, Amanda.
Click to expand...
Yes Jenny, they've been using them at our NHS podiatrists for years and I read that they're also meant damage earlier than the filament test when they "tickle" your toes.
 
Well - that's got to be good, if it detects neuropathry (?pathEry?) damage earlier. Wonder when a. normal NHS podiatry will get em and b. GP surgery nurses who do foot checks for diabetes patients of all flavours? I have asked for another referral to ordinary NHS podiatry because I really can't fold myself in two to cut my toenails while they are still sufficiently soft from the shower (we no longer have a bath) and because I defo can't stand on one leg and fold myself in two - can't get my nails scrubbed or use the pumice stone on the hard skin to my satisfaction, plus the hammer toes caused by my R foot bunion are worse .....
 
I use a private podiatrist to sort my feet out. No sensory neuropathy at all, so basically it’s just a nail trim, which I can’t do on my own. I don’t have any hard skin on my feet, because I hardly walk more than twenty steps a day, and most of that is in the bathroom. (Since I’ve told my watch I’m in a wheelchair it doesn’t tell me off any more about my levels of exertion.)

Ive got an appointment in about ten days to see the nurse at the surgery with a blood test seven days before, so no doubt she will want to see my feet and poke around. She’ll have to put my socks back on for me- and take them off come to think. I’ve got kit to do that, but I’m not carting that down to the surgery. It’s all a complete waste of time, anyway, I’m under diabetes consultant care regularly. I think I’ll exert my considerable charm on her next time, and aim for a pump. ( That is not a euphemism.)
 
Hi @AJLang so sorry to hear about your worsening peripheral neuropathy. I had it quite badly when first diagnosed. I was pointed to the Neuropathy Cocktail (a regime Of antioxidants, not an enjoyable drink with cherries and little paper umbrellas!) which helped a lot. See https://www.diabetes-support.org.uk/info/?page_id=597 and scroll down to where it says DPN treatment. There are also studies cited and references to give your doctor. It isn’t quackery.
 
trophywench said:
Well - that's got to be good, if it detects neuropathry (?pathEry?) damage earlier. Wonder when a. normal NHS podiatry will get em and b. GP surgery nurses who do foot checks for diabetes patients of all flavours? I have asked for another referral to ordinary NHS podiatry because I really can't fold myself in two to cut my toenails while they are still sufficiently soft from the shower (we no longer have a bath) and because I defo can't stand on one leg and fold myself in two - can't get my nails scrubbed or use the pumice stone on the hard skin to my satisfaction, plus the hammer toes caused by my R foot bunion are worse .....
Click to expand...
You would hope that it's good if they detect it earlier....but then when they tell you that there's nothing they can do about it, unless the pain starts, then it's difficult to know whether or not it is good to know. I guess in my situation I'm glad because it explains some of the problems that I've been having.
 
Pattidevans said:
Hi @AJLang so sorry to hear about your worsening peripheral neuropathy. I had it quite badly when first diagnosed. I was pointed to the Neuropathy Cocktail (a regime Of antioxidants, not an enjoyable drink with cherries and little paper umbrellas!) which helped a lot. See https://www.diabetes-support.org.uk/info/?page_id=597 and scroll down to where it says DPN treatment. There are also studies cited and references to give your doctor. It isn’t quackery.
Click to expand...
Thank you @Pattidevans I've now ordered the vitamins for the cocktail - but I struggle to digest vitamin tablets because of my gastroparesis, but I will certainly give them a good try.
 
AJLang said:
Thank you @Pattidevans I've now ordered the vitamins for the cocktail - but I struggle to digest vitamin tablets because of my gastroparesis, but I will certainly give them a good try.
Click to expand...

@AJLang , have you considered using R-ALA? (Must be R-ALA, not just ALA.) It isn't prescribed in UK for neuropathic pain, but it is in mainstream medicine in Germany and a few other places.

I used it for a while to help with post-surgical neuropathic pain in my ribs, from having the "French trimmed" during breast surgery. My neuropathic pain levels did lessen, but that could have just been the passage of time and deep healing. I also know of another person who has been using it for several years for neuropathy in her feet, which, in her case, is a result of a side effect breast cancer chemo. Every now and then she decides to see how things are without it, but ends up back on the R-ALA in brief time.

Just for info; I used Swanson R-Fraction Alpha Lipoic Acid, 600mcgr.
 
AJLang said:
Thank you @Pattidevans I've now ordered the vitamins for the cocktail - but I struggle to digest vitamin tablets because of my gastroparesis, but I will certainly give them a good try.
Click to expand...
Hope they work for you at least somewhat @AJLang - @AndBreathe's advice sounds good too.
 
AndBreathe said:
@AJLang , have you considered using R-ALA? (Must be R-ALA, not just ALA.) It isn't prescribed in UK for neuropathic pain, but it is in mainstream medicine in Germany and a few other places.

I used it for a while to help with post-surgical neuropathic pain in my ribs, from having the "French trimmed" during breast surgery. My neuropathic pain levels did lessen, but that could have just been the passage of time and deep healing. I also know of another person who has been using it for several years for neuropathy in her feet, which, in her case, is a result of a side effect breast cancer chemo. Every now and then she decides to see how things are without it, but ends up back on the R-ALA in brief time.

Just for info; I used Swanson R-Fraction Alpha Lipoic Acid, 600mcgr.
Click to expand...
Thank you. I will have a look. I’m struggling with the cocktail that Patti suggested because of the gastroparesis.
 
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