Diffuse Neuropathy
- Thread starter HpprKM
- Start Date
There is plenty of anecdotal evidence that mild neuropathy symptoms can be reversed or contained by controlling Bg levels but the more severe the neuropathy and the more damage there is makes reversing it unlikely.
It is 'work in progress'...........
There is apparently a new class of drugs being studied that might offer a better option for people with neuropathy. Present medications treat the symptoms by relieving the pain and discomfort.
The research is ongoing into something called PKC Inhibitors. Apparently in one particular study it was stated that, "It not only slowed the progression, but it showed that you could actually get some reversal of the nerve damage." The study of one particular drug showed that there are both symptomatic and objective signs that nerve function improved in subjects.
So at the moment, nothing definite but maybe in a year or two things may be very different. There are also studies taking place using other types of therapy as well. If you Google PKC Inhibitors you should find more information.
It's a competitive area which understandably the various companies are keeping fairly tight to their chest.....this from 2009 regarding the market information.
http://www.reportbuyer.com/pharma_healt ... itors.html
At the moment it is still the case that of all the treatments available tight and stable glycemic control is probably the most important for slowing the progression of any type of neuropathy.........
There is apparently a new class of drugs being studied that might offer a better option for people with neuropathy. Present medications treat the symptoms by relieving the pain and discomfort.
The research is ongoing into something called PKC Inhibitors. Apparently in one particular study it was stated that, "It not only slowed the progression, but it showed that you could actually get some reversal of the nerve damage." The study of one particular drug showed that there are both symptomatic and objective signs that nerve function improved in subjects.
So at the moment, nothing definite but maybe in a year or two things may be very different. There are also studies taking place using other types of therapy as well. If you Google PKC Inhibitors you should find more information.
It's a competitive area which understandably the various companies are keeping fairly tight to their chest.....this from 2009 regarding the market information.
http://www.reportbuyer.com/pharma_healt ... itors.html
At the moment it is still the case that of all the treatments available tight and stable glycemic control is probably the most important for slowing the progression of any type of neuropathy.........
Thanks for the info, I have not seen GP about it yet, but have read that tests should be done on a yearly basis and I am wondering just what the chances of this on the good old NHS - if anyone has any knowledge of this?
Also, just what the tests involve?
Also, just what the tests involve?
That certainly gives me hopeIanD said:
Where did the pain affect you most, if you don't mind me asking?My symptoms match this exactly:
Diabetic Proximal Neuropathy
Diabetic proximal neuropathy causes pain (usually on one side) in the thighs, hips, or buttocks. It can also lead to weakness in the legs. Treatment for weakness or pain is usually needed and may include medication and physical therapy. The recovery varies, depending on the type of nerve damage. Prevention consists of keeping blood sugar under tight control.
I am going to have to bring it up with my GP, I just hate keep going to her with the endless problems I seem to have had lately, before diabetes diagnosis I only went there once a year for health check ups
Diabetic Proximal Neuropathy
Diabetic proximal neuropathy causes pain (usually on one side) in the thighs, hips, or buttocks. It can also lead to weakness in the legs. Treatment for weakness or pain is usually needed and may include medication and physical therapy. The recovery varies, depending on the type of nerve damage. Prevention consists of keeping blood sugar under tight control.
I am going to have to bring it up with my GP, I just hate keep going to her with the endless problems I seem to have had lately, before diabetes diagnosis I only went there once a year for health check ups
IanD
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HpprKM said:My symptoms match this exactly:
Diabetic Proximal Neuropathy
Diabetic proximal neuropathy causes pain (usually on one side) in the thighs, hips, or buttocks. It can also lead to weakness in the legs.
Exactly that - I would wake up OK, then, as soon as I tried to move the pain set in & I could not move my right leg by its own muscles. I had to move my legs with my hands before I could sit on the edge of the bed. I could then move about, but stairs were painful. I feared I was becoming disabled.
That's when I found this forum.
Treatment for weakness or pain is usually needed and may include medication and physical therapy. The recovery varies, depending on the type of nerve damage. Prevention consists of keeping blood sugar under tight control.
I am going to have to bring it up with my GP, I just hate keep going to her with the endless problems I seem to have had lately, before diabetes diagnosis I only went there once a year for health check ups
What sort of level of high BGs causes Diabetic Proximal Neuropathy?
The reason I ask is because my Type 2 diabetes was caught very early, my BG was monitored 6-monthly over 6 years previously because my GP thought I was prime candidate! So the fasting 9, HbA1c of 6.5, April 2010, was the highest I've ever been.
I've always considered my muscle pain and weakness, which is similar to but not as severe as that described by IanD, to be caused by statins - Simvastatin, to be specific.
My symptoms include unable to get up onto stiles, sometimes even stairs without something to pull myself up with; coming down is stiff and painful too. I'm sometimes unable to get up from chairs that at another time I'll be okay with; I have pain in thigh muscles and an inability to balance properly, or to react quickly to a stumble. It's not in my ears, by the way! (balance). I can't walk any distance comfortably.
Some of it is weight; some of it is osteoarthritis; some of it could be due to a partly-torn anterior cruciate ligament.
Might it be worth me chasing up Proximal Neuropathy? I appreciate that no-one can diagnose, we can only compare symptoms, but any advice you feel you can give - I've lost nearly 2.5 stone now (still a long way to go), and my mobility and pain is no better.
Viv 8)
The reason I ask is because my Type 2 diabetes was caught very early, my BG was monitored 6-monthly over 6 years previously because my GP thought I was prime candidate! So the fasting 9, HbA1c of 6.5, April 2010, was the highest I've ever been.
I've always considered my muscle pain and weakness, which is similar to but not as severe as that described by IanD, to be caused by statins - Simvastatin, to be specific.
My symptoms include unable to get up onto stiles, sometimes even stairs without something to pull myself up with; coming down is stiff and painful too. I'm sometimes unable to get up from chairs that at another time I'll be okay with; I have pain in thigh muscles and an inability to balance properly, or to react quickly to a stumble. It's not in my ears, by the way! (balance). I can't walk any distance comfortably.
Some of it is weight; some of it is osteoarthritis; some of it could be due to a partly-torn anterior cruciate ligament.
Might it be worth me chasing up Proximal Neuropathy? I appreciate that no-one can diagnose, we can only compare symptoms, but any advice you feel you can give - I've lost nearly 2.5 stone now (still a long way to go), and my mobility and pain is no better.
Viv 8)
Sarah69
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This sounds very much like the pain I have been in for a long time! I have been going to my dr's for 18 months to find out what the problem is. This has never been suggested to me, are there any tests for this at all. If anybody has this what painkillers are you taking?
I take Volsaid Retard 75mg (mcg?) once a day, though I am allowed them twice a day if I need them. I've been on NSAIDs of one sort or another for so long that I'm trying desperately to get off them, but I can't quite manage it. If I know I'm going to be on my feet all day - on site maybe, or severe gardening :lol: , I'll take 2 for a couple of days before. They don't completely remove the pain and stiffness, but if I don't take any for a couple of days I soon know about it!
Volsaid are prescription only. Please discuss pain relief with your HCP - it can be very dangerous to take over-the-counter painkillers for a long time without supervision.
Since I stopped taking the Simvastatin I have noticed some improvement - though every now and again I seem to have a relapse!
Viv 8)
Volsaid are prescription only. Please discuss pain relief with your HCP - it can be very dangerous to take over-the-counter painkillers for a long time without supervision.
Since I stopped taking the Simvastatin I have noticed some improvement - though every now and again I seem to have a relapse!
Viv 8)
http://diabetes.niddk.nih.gov/dm/pubs/neuropathies/
This site gives an explanation of all neuropathies with diagrams showing the affected parts. It seems it can affect any part of the body.
This site gives an explanation of all neuropathies with diagrams showing the affected parts. It seems it can affect any part of the body.
Sid Bonkers
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HpprKM said:
Have you been running high blood glucose levels? As I notice in your profile you say you are diet only.
The reason I ask is that the symptoms you posted above match the symptoms I have had for three or four years before I had diabetes and in my case are caused by degenerative arthritis of the lower back (spondilitis) and have nothing to do with diabetes so if you do not have high blood glucose levels then it may be a good idea to see your GP as not everything is diabetes related
Another vote here for seeing your GP as Sid Bonkers suggested.
In addition to my Type 2 I have a back problem with spinal and exit canal stenosis that predated by 6 years my type 2 onset. The diabetes was probably accelerated by the obesity that resulted from lack of mobility. There is no doubt that the neuropathy that I suffer is partly caused by the back problem and partly by the diabetes but it is very difficult to separate out the effects.
Here is a run down of the effects I experience to use as a check list:
Pain in the ends of the toes like chilblain (even the numb ones).
Hypersensitivity alternating with numbness in the soles of my feet.
Varying mild to severe sciatic pain from my lower back down both legs (feels like a huge diffuse toothache)
Pins and needles in legs, feet, and parts of the hands. Actually the pregabalin I take to reduce the neuropathic pains causes carpal tunnel syndrome if my dose is too high
Highly unpleasant crawling sensations in the front of the thighs and the centre of my back.
Itching around areas of numbness.
Sensation like someone trickling hot water down the back of my legs.
Sensations in the feet like standing in hot sand.
If I persist in standing still for too long (frequently only 5 mins) both legs go numb and it feels like I'm walking on a bouncy castle. This is followed by falling over
This not an exhaustive list but I'm exhausted writing it. If you've got any of this little lot then it could be the diabetes or you may have an undiagnosed back problem as well hence 'go see your GP'.
In addition to my Type 2 I have a back problem with spinal and exit canal stenosis that predated by 6 years my type 2 onset. The diabetes was probably accelerated by the obesity that resulted from lack of mobility. There is no doubt that the neuropathy that I suffer is partly caused by the back problem and partly by the diabetes but it is very difficult to separate out the effects.
Here is a run down of the effects I experience to use as a check list:
Pain in the ends of the toes like chilblain (even the numb ones).
Hypersensitivity alternating with numbness in the soles of my feet.
Varying mild to severe sciatic pain from my lower back down both legs (feels like a huge diffuse toothache)
Pins and needles in legs, feet, and parts of the hands. Actually the pregabalin I take to reduce the neuropathic pains causes carpal tunnel syndrome if my dose is too high
Highly unpleasant crawling sensations in the front of the thighs and the centre of my back.
Itching around areas of numbness.
Sensation like someone trickling hot water down the back of my legs.
Sensations in the feet like standing in hot sand.
If I persist in standing still for too long (frequently only 5 mins) both legs go numb and it feels like I'm walking on a bouncy castle. This is followed by falling over
This not an exhaustive list but I'm exhausted writing it. If you've got any of this little lot then it could be the diabetes or you may have an undiagnosed back problem as well hence 'go see your GP'.
Ok, so we are not GPs and as individuals can only recommend or compare symptoms, remedies etc, but somehow it is a relief to know that others have similar problems. Of the many symptoms listed here I can identify with quite a few. Though, thankfully - if I have proximal neuropathy, as my symptoms seem to suggest - not as bad as others seem to suffer from it - yet! That is why I want to try and take it hand now. Someone mentioned they had been going to GP with various problems that GP did not identify as linked to Neuropathy. I guess not all GPs are well versed on diabetes, GPs seem to vary on what their specialisms are and it is such a complicated disease, my GP seems quite 'up' on the subject and I have yet to mention problem to her, which I will bring up at my next review - if the pain does not get too bad, as I am hoping to take strict diet control to help alleviate the symptoms. I will keep everyone up to speed with my progress, is anyone else thinking of doing the same thing - we could compare notes and support each other perhaps :?:
I am still wondering about the fact that every diabetic should have a neuropathy check once a year and if anyone experiences this?
Thanks again for being such a great bunch, one and all
I am still wondering about the fact that every diabetic should have a neuropathy check once a year and if anyone experiences this?
Thanks again for being such a great bunch, one and all
Sid Bonkers
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HpprKM said:
Yep, every visit to the diabetes nurse at the GP's, currently extended to 6 monthly she checks my feet by lightly touching the underside of each foot in various places with a needle like implement. I could barely feel it on both heels but I suspect that is due to the hard skin I have there.
I assume that is a test for neuropaphy?
Not really sure about that, as I can feel pin pricks to my feet but still have the burning feet and other related issues, do any other members know of a more in depth method? I am going to do a search on it in the meantime.
There are many things out there on the internet (as is expected) found some NHS stuff but not pretty pictures and would not wish to link them here! Also found this, description of what testing can be done, not sure how appropriate this is - and hope it is OK to link! http://www.endocrineweb.com/guides/diabetic-neuropathy/diabetic-neuropathy-diagnosis
Re: Proximal Neuropathy
Another link to same site on Proximal Neuropathy http://www.endocrineweb.com/guides/diabetic-neuropathy/types-diabetic-neuropathy#Proximal_Neuropathy Tingling feet I have had for many years, before I was even diagnosed, little did I know what the symptoms represented - more recently the nerve pain in my right leg (what I describe as toothache in my leg), radiating from hip/buttock down thigh and leg, matches this exactly and will bring to attention of my GP on my next visit. In the meantime I am going to try the strict control approach to try and alleviate the problem..
Another link to same site on Proximal Neuropathy http://www.endocrineweb.com/guides/diabetic-neuropathy/types-diabetic-neuropathy#Proximal_Neuropathy Tingling feet I have had for many years, before I was even diagnosed, little did I know what the symptoms represented - more recently the nerve pain in my right leg (what I describe as toothache in my leg), radiating from hip/buttock down thigh and leg, matches this exactly and will bring to attention of my GP on my next visit. In the meantime I am going to try the strict control approach to try and alleviate the problem..
Ardbeg
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Like most type 2's, my doctor reckons I was diabetic for at leat a year or two before diagnosis.
Being told I was type 2 was almost a blessing, for I felt, by my symptoms at the time, I had something FAR worse.
I literally felt I was being crucified on a daily basis. It honestly fely like someone was hammering a nail through my feet or stabbing my hands or arms with a stilletto blade knife.
Long story short, I have been taking Benfotamaine tablets for about a year now and my neuropathy has virtually disappeared.
The pills (bought in USA) cost me about £10 a month, but are worth every penny.
I cannot post a link on here as the moderators will remove it, but if anyone wants the link to the USA website I buy them from then just private message me
Being told I was type 2 was almost a blessing, for I felt, by my symptoms at the time, I had something FAR worse.
I literally felt I was being crucified on a daily basis. It honestly fely like someone was hammering a nail through my feet or stabbing my hands or arms with a stilletto blade knife.
Long story short, I have been taking Benfotamaine tablets for about a year now and my neuropathy has virtually disappeared.
The pills (bought in USA) cost me about £10 a month, but are worth every penny.
I cannot post a link on here as the moderators will remove it, but if anyone wants the link to the USA website I buy them from then just private message me
