Neuropathy

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Docb

Docb

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Relationship to Diabetes
Type 2
Over the last 10 years or so I have had creeping neuropathy. Started in my nose and has slowly spread to the whole of my face and into the neck. Also now getting some numbness in the lips, tingling in the hands and lower arm, and accompanying headaches. It waxes and wanes but when at a minimum now it is far more intrusive than it was when at a maximum a couple of years ago. I don't have a diagnosis other than a few long Latin words telling me that I have neuropathy in my face. Not helped by cancellation of neurology appointments, the last one at short notice, and the neurologist at RHP has ignored my appeal for some indication of where I go from here. When in industry, we referred to this as the p**s off and die approach to dealing with an unwanted problem. Ironic to get it from the NHS.

Having got rid of that, I am becoming increasingly aware that the intensity of my symptoms is eating related. Half an hour or so after eating (like now three quarters of an hour after my breakfast) more often than not, the intensity is on the way up. BG is 8 (just tested) compared with a waking 5 and I am confident it will be back down to 5 or 6 in an hour or so. Done quite a lot of testing and am happy that the intensity is not related to BG reaching levels that would normally cause me any concern. I have seen the odd 10 when trying to find the post eating peak but keeping within my range is the norm. It leaves me with the idea that the intensity of the neuropathy is a reaction to changing BG and not absolute level.

My question for the forum is, have any other members who have neuropathy seen anything similar?
 
I am so sorry to hear of your intensifying neuropathy. I have also seen my own neuropathy slowly increase over time. My blood glucose was steady and in range throughout though.

However, someone on this forum mentioned a cocktail of supplements that had helped them in their own neuropathy. I decided to give it a go and, amazingly, it has been effective, slow, but effective.

It might be worth your while trying it out for yourself. I doubt the NHS will be of much help in your condition, sadly.

If I can find it I will attach the original writing.

I do hope that you find some relief from this horrible thing
 

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I don’t know much about neuropathy @Docb but when you mentioned it was connected to eating I wondered if there could be a physical cause rather than a blood glucose cause? Is that something that has been ruled out - that is, are you sure it’s diabetic neuropathy rather than non-diabetic neuropathy?

It sounds very unpleasant for you.
 
@Gwynn, thanks for the response. I'm one of those who is a bit sceptical of such things but if it has worked for you then go with it I say.

@Inka. The neuro did not think the underlying cause was diabetes related last time I spoke to him. Wrong presentation for typical diabetic neuropathy. I also have an acquired nystagmus which kicked off at the same time as the neuropathy and the assumption is that they are related. So best guess it is not diabetic neuropathy but since glucose in the blood is fundamental to the working of the human system I began to wonder if the response to neurological damage from whatever cause might be sensitive to blood glucose and the way it changes. Not found any info on it so I thought I would consult the hive mind of the forum.

@Lanny. I am beginning to think that the increasing intensity is associated with rapidly rising BG and you have seen it with rapidly falling BG. Does two observations make a phenomenon? It would do in the social media world, but does it in the real world!
 
I am very sceptical too, but I decided that I would prefer to try and gamble on the unknown rather than stick to the known worsening condition. The worst I felt could happen to me was that I might lose some money or/and look a fool. But if it worked....
 
I had surgery in March that involved an incision in my femoral artery. My sugars typically stay between 5-8 but when they rise quite quickly between those numbers I feel all the nerves around that area kinda buzz, can also be painful. I had 26 metal coils put in my pelvic veins, fun fact !
 
Docb said:
No, not like that. No pain as such. I get a sensation which I liken to that you get when a dental anaesthetic is wearing off. Imagine that but more intense and there permanently.
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I get a, well, hard to say what it is, it's not really pins and needles, not really numbness, not really a bruised feeling, but an awareness of a combination of all three, in my left foot occasionally.
It's usually after I've sat with my feet crossed, or worn my sandals too long, bare foot. (I have just taken them off after easter, and now wear a closed toe version, with a sports sock now it's cold.
I'm never really worried about it, but you prompted me to have a look at what it is.
Apparently it's a classic pinch point on the top of the foot that catches a nerve running under it.
So, I suspect it's simply physical for me, a slightly damaged nerve reacting to pressure on it.
(I did put a rusty nail through my foot years ago, maybe it's catching up on me now)
The fact it comes and goes, (and the fact I get my feet ultrasound checked, along with many other private health checks to keep my scuba diving up every year) never really made me worry it was neuropathy, as that mainly tends to be fairly consistent.

Just some things to think about.

You said yours came on with nystagmus as pretty much the same time?
Is there any correlation between the two?
Does the nystagmus come on as an event, not constant, has that a trigger?

To rule out any physical causes, such as a trapped nerve, or pressure from anywhere else,
as a control, can you try going zero carbs for a few meals?
Say pure meat, don't raise you BG, and check it's not a physical action of eating that triggers the neuropathy?

Then try purely raising your BG by something like a glucose tablet or two, simply sucking them to raise your BG, and check the result with no physical action.
 
EmmaL76 said:
I had surgery in March that involved an incision in my femoral artery. My sugars typically stay between 5-8 but when they rise quite quickly between those numbers I feel all the nerves around that area kinda buzz, can also be painful. I had 26 metal coils put in my pelvic veins, fun fact !
Click to expand...

Have you been back to your GP about that?
It should be a platinum wire. It's inert, but it's a catalyst for other reactions.
If you buzz after the operation, it suggests something is going on that is firing the nerves off locally when you BG changes. It could be either chemical or electrically direct.
There may be something he can suggest to help.
 
Thanks for your reply , don’t know exactly what he used. Just said metal coils. He promised to send me something through the post but never did, detailing what was done in case I have trouble getting through security at the airport lol which he said shouldnt happen due to the materials used. So what your saying is that it harmless but could be helped ?
 
EmmaL76 said:
Thanks for your reply , don’t know exactly what he used. Just said metal coils. He promised to send me something through the post but never did, detailing what was done in case I have trouble getting through security at the airport lol which he said shouldnt happen due to the materials used. So what your saying is that it harmless but could be helped ?
Click to expand...

I can't say exactly that, but it is certainly worth telling him you are having a reaction, as it's not normal to feel them after as far as I know.
 
Well that would be just about right for me… never normal! Thanks for your input, much appreciated x
 
Interesting comments @travellor.

I'm fortunate with the nystagmus because I only become aware of it when I look off centre and get double vision with the images displaced vertically. Anybody looking at my eyes can see the jerking characteristic of a nystagmus but I notice nothing. I have often wondered whether it is getting more pronounced and even thought about making some sort of camera based system to measure it but that is well out of my skill set. Chances are the neuropathy and nystagmus have a common cause, at least I think that is what the neuro thinks.

In terms of experimenting with carb content in meals I have thought about that and would make a couple of observations. The effect is generally less pronounced after lunch which is consistently the lowest carb meal I have. Against that I find that a cup of tea and a biscuit can kick things off. In the absence of any input from the professionals I think I might start a bit more intensive data collection to see if there are any indicators.

@EmmaL76 - sounds interesting (if you have a strange view of what constitutes interesting) and not too dissimilar to what I am getting.
 
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