[canagirl]

Does anybody feel like their body shakes or vibrates all the time? It's like something is implanted in my neck, arms, back, legs that causes me to vibrate all time. It feels like millions of nerves are all during at once.

Does anybody here have physical damage to their nerves? I have this literally constant twitching or pulsing of my nerves that seems to start at the injury site
And go from there. Does this improve ?

Also, I have cut out carbs, almost all sugar ( small amount of berries in the morning, gluten for one month but felt no difference so I stopped. I have tried this for the past 6 months ( on and off) but feel zero diff.
Wouldn't u feel some improvement if this was working? I hater
Eating rhis way so it's hard to stick to when I don't notice improvement. What is ur opinion on this? It's a bad dream I can't u p from

The hot burning, pulsating hands and feet r not getting better just worse. I'm soo sad. It's like u keep thinking this is going to magically go away.
H

[janieg]

I wake up almost every morning "vibrating." The way I describe it is that I feel like I'm plugged into an electrical socket and have a low level electrical current running through my body. Usually though, as soon as I get up or start moving around, it subsides. Other symptoms crop up as the day moves on.

High blood glucose is a known and common source of nerve damage. 60% to 70% of all diabetics have some level of neuropathy. Unless you've taken the Oral Glucose Tolerance Test and know for an absolute fact that you have zero glucose issues, I can't imagine having neuropathy from ANY source and not trying to watch carb intake.

This is a good read, especially the case studies mentioned. I'm not saying this is your problem, but this is why the OGTT is so important for anyone with neuropathic symptoms. One of the major, well-renowned hospital websites (can't remember which one) says it should be a standard part of any neuropathic work-up.

http://www.jabfm.org/content/17/2/127.full

"The cause of polyneuropathy remains unknown in more than 20% of cases despite extensive laboratory testing. The incidence of idiopathic cases is believed to be even higher among patients presenting with painful sensory neuropathy. However, some patients with “idiopathic” painful sensory neuropathy have ultimately developed overt diabetes mellitus after many years of follow-up, suggesting that occult impairment of glucose metabolism may have been the cause of their symptoms all along. There have been a number of recent series suggesting than more than 50% of the patients referred to neuromuscular clinics with a diagnosis of “idiopathic” painful sensory neuropathy have abnormal glucose metabolism when they are evaluated using the 2-hour glucose tolerance test (Table 3). Of these, more than 50% have impaired glucose tolerance, so the fasting glucose and glycohemoglobin are frequently normal despite an abnormal glucose tolerance test. These incidences of occult diabetes and impaired glucose tolerance are significantly higher than those reported for the general population, suggesting a causal relationship."

[canagirl]

Originally Posted by janieg

I wake up almost every morning "vibrating." The way I describe it is that I feel like I'm plugged into an electrical socket and have a low level electrical current running through my body. Usually though, as soon as I get up or start moving around, it subsides. Other symptoms crop up as the day moves on.

High blood glucose is a known and common source of nerve damage. 60% to 70% of all diabetics have some level of neuropathy. Unless you've taken the Oral Glucose Tolerance Test and know for an absolute fact that you have zero glucose issues, I can't imagine having neuropathy from ANY source and not trying to watch carb intake.

What have your dr's said about this symptom? Mine look at me like I am nuts!

Also, has your high fat/low carb diet made a noticeable difference for you? Have you noticed any improvement with it? Or have you not noticed any improvement but continue on it to try and prevent progression?

[janieg]

Originally Posted by canagirl

What have your dr's said about this symptom? Mine look at me like I am nuts!

Also, has your high fat/low carb diet made a noticeable difference for you? Have you noticed any improvement with it? Or have you not noticed any improvement but continue on it to try and prevent progression?

My doctors just kind of shrug when I mention this symptom. It's just one of many odd things I feel.

I've been on the low carb diet since about October, although I had been cheating quite a bit which I've stopped doing. From a year ago, I can definitely say my symptoms have not worsened at all, and I'm pretty sure have improved. I say that I'm "pretty sure" because there's a big psychological aspect to this. I'm no longer panic-stricken by it all, and it's a fact that anxiety makes symptoms worse.

Without a doubt, though, the horrible zapping nerve pain is at a minimum now. That nasty pain would sometimes keep me from sleeping as I'd lie awake all night in misery. That's definitely stopped. I think that started improving when I started the R Lipoic Acid supplements, but it was also not too long later that I started cutting out carbs significantly.

I definitely am at a point now where I have more good days than bad, but there's never a day that I'm without symptoms. I've just kind of adjusted to my "new normal."

[canagirl]

Originally Posted by janieg

I wake up almost every morning "vibrating." The way I describe it is that I feel like I'm plugged into an electrical socket and have a low level electrical current running through my body. Usually though, as soon as I get up or start moving around, it subsides. Other symptoms crop up as the day moves on.

High blood glucose is a known and common source of nerve damage. 60% to 70% of all diabetics have some level of neuropathy. Unless you've taken the Oral Glucose Tolerance Test and know for an absolute fact that you have zero glucose issues, I can't imagine having neuropathy from ANY source and not trying to watch carb intake.

I have had a fasting blood test for glucose (I am not sure what they test in this a1c?) and it came back normal. I asked for a glucose tolerance test but my doc said the blood test is better and since it came back normal I don't have any issues. He said the glucose tolerance test puts a lot of stress on the body and doesn't think I need to do it. What do you guys think?

[janieg]

Originally Posted by canagirl

I have had a fasting blood test for glucose (I am not sure what they test in this a1c?) and it came back normal. I asked for a glucose tolerance test but my doc said the blood test is better and since it came back normal I don't have any issues. He said the glucose tolerance test puts a lot of stress on the body and doesn't think I need to do it. What do you guys think?

A1c is not the Oral Glucose Tolerance Test. A1c shows an average of what's going on with your sugar over a couple of months, but it does NOT show what's happening with your sugar on a daily basis. My A1c is perfectly fine, yet my glucose spikes high and stays high when I eat carbs. So for 12 hours a day, my glucose is probably at or near fasting levels , and for the other 12 hours a day (when I was eating a lot of carbs), my glucose was likely high. That probably averages out to something pretty normal, but the high daily levels certainly still could have been doing nerve damage.

Diabetes didn't show up in my OGTT, but the Reactive Hyploglycemia did. My regular doctor confirmed that I needed go low carb immediately and get more exercise.

[bluesfan]

Janieg

Thanks for the link to the 'jabfm' article - very interesting.
Makes me wonder why more doctors don't order the Oral Glucose Tolerance Test for people with PN - the usual HBA1c test (with normal results) doesn't seem adequate to pick up sub-clinical diabetes. It also seems that in some cases PN is an early warning sign that some people may go on to develop clinical diabetes. At the very least some of those given the idiopathic PN label could be helped by having this test.
I'll keep this info in mind when I finally get to see a neuro next week - not that I can see them having much interest in diabetes - I'll probably just get the idiopathic label.

[janieg]

I don't know why the OGTT isn't part of the standard neuropathy diagnostic ritual. It certainly seems that there's ample evidence indicating it should be.

This is what the Cleveland Clinic says on one of its webpages:

http://www.clevelandclinicmeded.com/...hy/Default.htm

"It is important to screen patients for diabetes mellitus. In the past, a fasting blood sugar or hemoglobin A1c, or both, was often performed, but recent reports suggest that impaired glucose tolerance detected on a glucose tolerance test might provide more meaningful information regarding diabetes as a potential cause for polyneuropathy."

[Maryoochi]

Originally Posted by canagirl

Does anybody feel like their body shakes or vibrates all the time? It's like something is implanted in my neck, arms, back, legs that causes me to vibrate all time. It feels like millions of nerves are all during at once.

Does anybody here have physical damage to their nerves? I have this literally constant twitching or pulsing of my nerves that seems to start at the injury site
And go from there. Does this improve ?

Also, I have cut out carbs, almost all sugar ( small amount of berries in the morning, gluten for one month but felt no difference so I stopped. I have tried this for the past 6 months ( on and off) but feel zero diff.
Wouldn't u feel some improvement if this was working? I hater
Eating rhis way so it's hard to stick to when I don't notice improvement. What is ur opinion on this? It's a bad dream I can't u p from

The hot burning, pulsating hands and feet r not getting better just worse. I'm soo sad. It's like u keep thinking this is going to magically go away.
H

Yes, when I lie in bed & close my eyes it feels like the whole bed should be shaking but with my eyes open I can see that the bed's not moving at all. Feels like I'm on a train station & a train is roaring by. I'm very sad too. I've mentioned this sysptom and several others to various doctors & I can't face seeing the look or their faces any more. How many times will a doctor just nod their heads yes? How is it possible that NOBODY has made it their passion to develop a cure PN??? And, how can I possibly wrap my mind around the fact that I will have to endure the physical pain & bizarre symptoms of PN for the rest of my life? Can everybody tell how miserable, lonely, angry & despairing I've been feeling for over 1 YEAR???

[Neuroproblem]

Originally Posted by Maryoochi

Yes, when I lie in bed & close my eyes it feels like the whole bed should be shaking but with my eyes open I can see that the bed's not moving at all. Feels like I'm on a train station & a train is roaring by. I'm very sad too. I've mentioned this sysptom and several others to various doctors & I can't face seeing the look or their faces any more. How many times will a doctor just nod their heads yes? How is it possible that NOBODY has made it their passion to develop a cure PN??? And, how can I possibly wrap my mind around the fact that I will have to endure the physical pain & bizarre symptoms of PN for the rest of my life? Can everybody tell how miserable, lonely, angry & despairing I've been feeling for over 1 YEAR???

My body shaking coincides with my pulse, its like my own heartbeat/pulse is moving my whole body, its very subtle but i notice it does it when i am still. I believe that my own heartbeat is moving my whole body. I heard from other sources that it could be if you are a skinny person, where you have no fat to absorb the "vibrations of the heart, so it just reverberates your body and making it move.
When i am still sometimes, my i get the sensation my body is like on a very shaky boat. side to side.

How is it possible that NOBODY has made it their passion to develop a cure PN???

PN as you know from this forum alone have more multiple causes, and majority of pn have unknown cause, even the ones that are known to cause it, has unknown triggers, and mechanism of actions. Its like asking the cure to cancer, which nobody is close to finding , because there so many different kinds like PN.