Neuropathic pain....what is it?

[ddjdiver]

Our son has been complaining about having a lot of pain in the back of his legs, hamstring area, and lower back while he is sitting in his chair as well as laying on his back in bed. I'm a massage therapist so he gets at least 1, one hour massage every day as well as stretching and range of motion exercises. He describes his pain as a burning, pounding kind of pain. Is this neuropathic pain? Exactly what is neuropathic pain? He does have al ot of sensation type of feeling all over his body, and he also has reflexes. But unfortunatly he does not have any motor below his neck. Anyone out there that can explain what is going on? Thanks

[kate]

hi ddj--

unfortunately, there are lots of people here who suffer from neuropathic pain, and I'm sure some of them will chime in.

Here's what I know from watching my husband deal with it for the last 5 years:

It's usually triggered by light touch, like soft stroking.
It's hard to medicate, but not impossible. Bruce takes gabapentin (same thing as neurontin) and has also experimented with lyrica.
It's a good idea to stay ahead of it . . . if he forgets to take the meds, it can suddenly grab him, and then it takes awhile to get it to quiet down again.
It can change in intensity over time. The first couple of years, he was constantly having to be vigilant w/ the meds, and there were still times when it got the better of him. Over the last year or so he's been gradually cutting back as much as he possibly can and is down to about a third of the original dose.

(I'm typing this and thinking, omg, I'm speaking in years here. Years of living with this already gone by . . . it's weird. I remember when I first came here, how impossible it seemed that we would ever learn to deal with everything.)

Anyway, I'm sure others will jump in and tell you the exact neurological mechanism that causes the pain--my impression is that it's the sensory version of the thing that causes spasms and spasticity--partial signals through the injury site that the body misinterprets.

Hope this helps, and btw, good on you for the massage and range of motion. Your son is lucky!

[cass]

i'm pretty sure a mod will move this to the pain forum. oops! hi kate! how ya doing? i'd like to get together again for dinner sometime!

neuropathic pain can result after injury, damage or trauma to the central or peripheral nervous systems. burning, pins and needles, abdominal pain are a few common descriptions of the pain. it sounds like your son, unf., may be dealing with neuropathic pain.

an online source you may want to look at is painonline. the pain forum moderator (david berg) runs that site.

http://www.painonline.com/

[ddjdiver]

Thanks Cass, I realized after I posted in this forum that I should have put in under pain. Thanks for the link though.

[Obieone]

My husband Bill has this type of pain as well and Kate's description pretty much covers how I would describe it. He's on a fentanyl patch and oxycontin which dulls the pain but he says its still always there just under the surface ..... the meds make him sort of flat and spacey but the alternative is just not an option. We juggle meds always searching for the right combination. I used to use my Reiki on his shoulders and back and that did help somewhat but he (and I) weren't patient enough .. a regular massage has always been one of the most beneficial pain management techniques for Bill not just because it doesn't come in a pill but because of the mental benefits it brings with it. He had someone come to the house once a week until just recently but she had to stop for awhile because she had a baby ... we are looking forward to her coming back. They usually visit and he vents about his pain and she often will suggest stretches or exercises etc. for him to do between visits ... "her" word carries more weight than anything I might suggest :thinking: ... whatever works I say :D !


Obieone http://www.clicksmilies.com/s0105/natur/nature-smiley-016.gif

[Leif]

I found this description of naturopathic pain from Dr. Wise here earlier, here is a link; http://sci.rutgers.edu/forum/showpost.php?p=293124&postcount=4

I have some of this pain, not to severe though but I take Neurontin (gabapentin) for it, and for me it helps, I take 600mgx3/day. Don’t know if this will help for your son though; check it out with a physician.

[David Berg]

an online source you may want to look at is painonline. the pain forum moderator (david berg) runs that site.

http://www.painonline.com/

Thanks for the reference Cass, but my website is slightly different, http://www.painonline.org The .com site has much in common and is "sort of" a sister site, but they are seperate.

DDS, Dr Young's post is a great description of neuropathic pain. My short explaination when someone asks me what neuropathic pain is is this; Damage caused to sensory nerves that causes pain sensations. Perhaps the easiest way to explain the sensations is that they don't feel like anything "normal". The burning sensations, the hypersensitivity, the "lightening", shock feelings...neuro pain can take many forms. Perhaps this page on my site with descriptions from folks with central pain, which is neuropathic pain caused by damage to the CNS, will help a little.
http://www.painonline.org/description.htm

[David Berg]

DDJ, one more note. One possible component of central pain is neuropathic pain that can manifest as muscle pain. Some people with this benefit from massage that stretches the muscle spindle by using deep pressure without rubbing. See http://painonline.org/muscle.htm

[ddjdiver]

Thanks for all your responses. I think I have a better understanding now. Let me ask you this, we were told that Adam would never sweat below the site of his injury. However, since this pain started in his legs he has been sweating all over! Do you think it is related? Also, yesterday was really the first day that his pain was pretty bad, but he didn't have a single spasm. He usually has bad spasms all day long. Weird things are happening, any insight?

[cass]

sorry, david, i don't know why i always make that slip. and i was just at your site (the org one) the other day. :o

[David Berg]

No problem Cass. Just to make it more confusing, 10 years ago the content now on my .org site had it's origins at the .com address. About the time I took things over, the .com address got tied up in a mess where no one could transfer or move it because of some stubborn headaches caused by Network Solutions and an old, merged/obsolete ISP address listed on the contacts for the WHOIS for the address. I kept the site alive by purchasing the .org address, then a couple years ago someone finally freed the .com address and put it to work. There's a lot of good content there, too. Hmmm, I think I'm just confusing things more by trying to explain it, lol.

DDJ, I'm a poor one to try to explain exactly why he's sweating, but yes I can picture this and I would guess it's related. Short, layman's explanation is that it's related to a confused nervous system.

[alan]

My sort-of pain diary (whinefest) is at the painonline.com site. "Reality CP," they call it.

[firesmurf]

just an FYI,to sweat or not to sweat is usually related to the sympathetic nervous system,and also possibly,with certain syndromes brought on by SCI,the spinothalamic tract.I have a damaged SNS and believe me,I have definite areas where I just don't sweat at all and others where I really make up for that by "over sweating"?I am talking waking up in the middle of the night just totally completely saturated/swimming in it but only on the L side,as my R side from the chest on down,i just don't,at all due to the SNS and also a damaged spinothalamic tract that caused brown sequard syndrome.so i kind of have a combo of crap on that side.

also due to the SNS damage,I developed horners syndrome which among other things has made me lose the ability to sweat but only on one side of my face.

but there seems to be that definite " compensation" thing going on in the parts that still DO sweat that keeps it on overload.I have to sleep on a stack of towels that I can remove one by one when I have to get up in the middle of the night for the potty runs.also a stack of fresh jammies really comes in handy too.it really all just sucks actually.

But David really summed it up best with the "confused nervous system".the one big thing i found out once my spinal cord was damaged is that just about anything and everything is possible neuro wise,once the damage has been done.it is one big adventure of constant fluctuating neuro wierdness.no two days for me anyways,are ever the same.

Just exactly how was your sons spinal cord damaged and what specific areas were actually damaged,this could help shed some light on why this may be occuring.marcia

[David Berg]

DDJ, I was just thinking of some emails I exchanged several years ago with a woman working on a her masters in PT who was doing a thesis on using PT to treat central pain caused by stroke. Different cause, but the pain is pretty much the same thing, damage to sensory nerves in the CNS. She was from Belgium and I never got a copy of the thesis, but of course I wouldn't have been able to read it anyway. It would have been interesting to look over. I might still have the emails around somewhere on a backup tape or something if I really dug, but I'm confident her address wouldn't still be valid, I believe it was from her university.

[wheels4me]

Hi
Just by 2 bobs worth. I am a c5/6 incomplete 12yrs post.Up until a couple of years ago I suffered from shocking nerve pain (what it is called here in oz)mainly on my butt, back of thighs and my lower back, all area's that were in constant contact with my chair.My spinal Dr finally put me on neurontin and I now call it my wonder drug, it has not taken the pain away completely but I would have to say that it is 80% better and has made life a lot easier for me.
In regards to the sweating, I can still sweat in the heat etc,but for about 2yrs after my accident when I way lying down I would sweat like anything, drench my pillows everynight,bed linen etc, as soon as I stopped taking baclofen it stopped within 2 or 3 weeks, so not sure if that was the cause, but stopping that for your son probably isn't an option as he sounds like he needs it for his spasms.I do know that there is a medication that you can take to help with severe sweats but not sure if it would interact with any of the meds that he is currently taking.
SCI's are a strange thing, no two people are the same, what may work for one won't always work for the other, it's usually just trial and error.
Oh and just another thing my nerve pain is always without a doubt worse in summer.
I hope that your son finds some releif soon.
W4Me

[firesmurf]

one big question that I would just LOVE to know the answer to is,why people tend(at least with me anyways and some others I have spoken to ) to sweat lke little pigs when sleeping,even for a short nap,but don't sweat like that while we are awake?does anyone else suffer with their sweating in just this way only besides me and it appears W4Me?I never sweat during the day(unless its hotter than a bitch outside)like the way I do while sleeping.marcia

[wheels4me]

Yeah Marcia like you I only used to sweat whilst in bed never when I was up and in my chair, except on a stinking hot day of course.Who knows why would be interesting to see what others think would be the cause of it mainly only happening when in bed though.
Just remembered something else, from memory mine was worse in winter when I was in bed not so bad in summer...Strange

[Methylcobalamin1@msn.com]

Hi,
Someone said they were expecting people to chime in...
so here goes.

I had pretty bad peripheral neuropathy pain in my thigh. It was like a third degree burn. Not all the time, but a lot.

All the time it was too painful to sleep on a regular mattress and I kept getting air mattresses. (they leak after awhile)

The peripheral neuropathy was from low B12 that went undiagnosed and untreated for too long.

Then I got tetanus because I didn't feel a broken bit of needle in my toe.

Tetanus is a central nervous system disease. I had thought, before I had it, that all it did was lock the jaw and then people wasted away from not being able to eat.

What it really does is lock all the muscles. It gives extremely painful muscle seizures ...

Okay, so when it would tighten the muscles in my thigh it was just screaming bad pain. It was like molten glass shards being shot into my thigh and they felt like they cut/burned their way in.

Well, luckily the one doctor that I'd seen (a year or so earlier) had given me a massive prescription for cyanocobalamin, which is injectable B12. So I began giving myself a lot of extra shots.

I was taking MAX Ibuprofen, and it really didn't deaden the pain much at all when the thigh thing happened.

Okay, so after a week or so it did seem that the pain was a little less frequent. (it wasn't ever constant, it was always intermittent, the really awful sharp pain). Then it seemed like it was really a lot less.

When I finally got to go to a doctor (I was poor at the time and none of them would see me because I didn't have the amount of money they wanted) he gave me a three weeks long dose of Metronidazol in about the highest dose available.

So that helped with the tetanus and with the blood infection that seemed to be causing these thin lines under my fingernails. But, I began having a lot of trouble with my feet going totally numb and I'd feel like I was falling.

So the doctor prescribed a shot a day... (which is about what I'd been having when the thigh pain had been so bad.)

Well, the peripheral neuropathy went nearly completely away.

I sleep on a foam mattress now, which is way better because it doesn't ever lose air in the middle of the night.

There has been some burning pain recently, but there's also been some major stress recently.

Soooo, I believe that low B12 is related to perhipheral neuropathy. And, since B12 isn't dangerous, it's easy to try to see if it helps.

only you have to be sure to look for the Methylcobalamin kind, in sublingual form. It works much better than the more common cyanocobalamin. (cyanocobalamin is fine for shots, not sublinguals)

If you take 1,000 mcg a day, that is about equal to one B12 shot a month.

I think it's better to take a 5mg sublingual (which is five times as strong) because otherwise it doesn't seem to make any difference.

I went to the subinguals because I was sooooooo tired of shots. But I got much worse again, so then I realized that a shot a day was a lot lot more B12 than a single B12 sublingual.

I did a web site about B12 because I was so shocked that I could get brain damage and nerve damage from being low on a vitamin.

[dejerine]

Methyl,

What is the cause of your low B12?

[Leif]

Soooo, I believe that low B12 is related to perhipheral neuropathy. And, since B12 isn't dangerous, it's easy to try to see if it helps.

only you have to be sure to look for the Methylcobalamin kind, in sublingual form. It works much better than the more common cyanocobalamin. (cyanocobalamin is fine for shots, not sublinguals)

If you take 1,000 mcg a day, that is about equal to one B12 shot a month.

I think it's better to take a 5mg sublingual (which is five times as strong) because otherwise it doesn't seem to make any difference.

I went to the subinguals because I was sooooooo tired of shots. But I got much worse again, so then I realized that a shot a day was a lot lot more B12 than a single B12 sublingual.

I did a web site about B12 because I was so shocked that I could get brain damage and nerve damage from being low on a vitamin.To much B12 harms your liver. As for one B12 shot a month? Whats up?

[Methylcobalamin1@msn.com]

Methyl,

What is the cause of your low B12?

My mother had pernicious anemia. I've read that it is hereditary. The doctors were no help. One said I could not be B12 deficient because I was not a vegetarian.

But the few shots I was able to get by begging helped, so I read up on it.

That's why I posted all the excerpts from the research on my web site.

I always figure that if something happens to me, then it's happening to a lot of other people, too.

I've read that having had Sulfa drugs when I was a child... that could have interfered with the basic mechanisms necessary to get B12 from food.

But from keeping a Time Line, as directed by the neurologist I was seeing, I know that my B12 level drops when I am under stress.

I used to have regular B12 tests, so I was able to see how my level changed, and it went down in relation to stress. Once it went down 251 points after a particularly upsetting court thing.

Is that (all of the above) sort of what you were wondering?

[Methylcobalamin1@msn.com]

To much B12 harms your liver. As for one B12 shot a month? Whats up?
I've never read that about the liver. Where did you see that?

I don't know what you mean about a shot a month, what's up?

I don't understand what you mean.

[Leif]

I've never read that about the liver. Where did you see that?

I don't know what you mean about a shot a month, what's up?

I don't understand what you mean.
Hello. I just say that to much B12 in not necessarily a good thing. There was a study here last year that indicated that too high B12 levels in the liver could harm the liver. I was looking for the study but could not find it. B12 is stored in the body and around 80% of it is stored in the liver. I heard some docs talk about it in the news and was also reading about it a time ago but can’t find it. But they said too much B12 could harm the liver and that doc’s should be careful with giving B12 injections to patients and carefully monitor their levels. If there were patients on B12 injection treatments due to anemia they also suggested liver blood tests from time to time… There have also been several recent studies that vitamins not always are a good thing; here is one discussing B12 and combinations of B vitamins. In this study they even suggest to much B vitamins can give a harmful effect. Please see here; http://content.nejm.org/cgi/content/abstract/NEJMoa055227 (http://content.nejm.org/cgi/content/abstract/NEJMoa055227)

[Methylcobalamin1@msn.com]

Hello. I just say that to much B12 in not necessarily a good thing. There was a study here last year that indicated that too high B12 levels in the liver could harm the liver. I was looking for the study but could not find it. B12 is stored in the body and around 80% of it is stored in the liver. I heard some docs talk about it in the news and was also reading about it a time ago but can’t find it. But they said too much B12 could harm the liver and that doc’s should be careful with giving B12 injections to patients and carefully monitor their levels. If there were patients on B12 injection treatments due to anemia they also suggested liver blood tests from time to time… There have also been several recent studies that vitamins not always are a good thing; here is one discussing B12 and combinations of B vitamins. In this study they even suggest to much B vitamins can give a harmful effect. Please see here; http://content.nejm.org/cgi/content/abstract/NEJMoa055227 (http://content.nejm.org/cgi/content/abstract/NEJMoa055227)


Ah, you are talking about all B vitamins, then?

I know that too much B6 can have a bad effect. I just have never found a study that showed that B12 was a problem. I will read what you've provided. But it sounds as if it isn't focused on B12.

A shot a month was not enough to bring about the major improvements that I have experienced. I needed more than a shot a day to do that.

My understanding from all the research that I have read, is that our bodies excrete the B12 that they do not use, so it DOES NOT build up in the body.

Here is the link to my page with the B12 research excerpts:
http://www.health-boundaries-bite.com/Vitamin-B12-Research-Excerpts.html (http://www.health-boundaries-bite.com/Vitamin-B12-Research-Excerpts.html)

I think it is really important for people to keep track of their own symptoms along with the amount of B12 they are taking so that they can see exactly what the effect is.

If they begin to feel better, and the symptoms of low B12 go away or reduce in severity, then they are doing the right thing and maybe could even increase the amount they are taking if there is still a long way to go.

If on the other hand their symptoms do not go away or reduce, then B12 has nothing to do with the pain or numbness, etc.

It takes a while for it to work, so there should be a few weeks of noting the results.

I think it is very dangerous (at least it was in my case) to just go with what the doctors told me and did.

I would have been much better off if I had known about B12 earlier.

[Methylcobalamin1@msn.com]

Hello. I just say that to much B12 in not necessarily a good thing. There was a study here last year that indicated that too high B12 levels in the liver could harm the liver. I was looking for the study but could not find it. B12 is stored in the body and around 80% of it is stored in the liver. I heard some docs talk about it in the news and was also reading about it a time ago but can’t find it. But they said too much B12 could harm the liver and that doc’s should be careful with giving B12 injections to patients and carefully monitor their levels. If there were patients on B12 injection treatments due to anemia they also suggested liver blood tests from time to time… There have also been several recent studies that vitamins not always are a good thing; here is one discussing B12 and combinations of B vitamins. In this study they even suggest to much B vitamins can give a harmful effect. Please see here; http://content.nejm.org/cgi/content/abstract/NEJMoa055227 (http://content.nejm.org/cgi/content/abstract/NEJMoa055227)

Boy, 40 mg of B6 is really a lot. I would never take that much myself.

B6 does build up in the body, from my understanding of it.

Read the study again, and look closely at what it is saying.

That is a flawed study, to my way of thinking.

I believe that drug companies hate vitamins that are really useful because they cut down on drug sales.

I have to go back and see if it says who paid for the research. I mean, I thought doctors all knew that too much B6 was a problem.

[Leif]

As for the liver I was talking just B12. B12 builds up in the liver.

[Methylcobalamin1@msn.com]

Hello. I just say that to much B12 in not necessarily a good thing. There was a study here last year that indicated that too high B12 levels in the liver could harm the liver. I was looking for the study but could not find it. B12 is stored in the body and around 80% of it is stored in the liver. I heard some docs talk about it in the news and was also reading about it a time ago but can’t find it. But they said too much B12 could harm the liver and that doc’s should be careful with giving B12 injections to patients and carefully monitor their levels. If there were patients on B12 injection treatments due to anemia they also suggested liver blood tests from time to time… There have also been several recent studies that vitamins not always are a good thing; here is one discussing B12 and combinations of B vitamins. In this study they even suggest to much B vitamins can give a harmful effect. Please see here; http://content.nejm.org/cgi/content/abstract/NEJMoa055227 (http://content.nejm.org/cgi/content/abstract/NEJMoa055227)


Here's what I think is a copy of the study's results in full:

http://www.medscape.com/viewarticle/512905

notice that in it, it doesn't show B12 at all.

Folic Acid, as an aside, is a bit dangerous in terms of B12 because if someone is taking Folic Acid (or getting it in supplemented food products, and then they have a B12 test, it looks as if they have enough B12, but really they don't. The Folic Acid only makes it appear that way.

[Methylcobalamin1@msn.com]

As for the liver I was talking just B12. B12 builds up in the liver.
No, I don't think it does.

I do worry that the cyano part of the Cyanocobalamin in the shots I take builds up.

So I try to take methylcobalamin lozenges a part of the time.

[Methylcobalamin1@msn.com]

As for the liver I was talking just B12. B12 builds up in the liver.
Maybe B6 builds up in the liver.

I don't know as much about B6.

I concentrated on B12 because it was a deficiency in B12 that caused my nerve damage.

[Leif]

That is a flawed study, to my way of thinking.

I believe that drug companies hate vitamins that are really useful because they cut down on drug sales.
As for the cardiovascular research including vitamin B12 (NORVIT);
http://uit.no/med-befolkning/6408/ (http://uit.no/med-befolkning/6408/)
http://www.eurekalert.org/pub_releases/2005-09/esoc-n090505.php (http://www.eurekalert.org/pub_releases/2005-09/esoc-n090505.php)
http://www.clinicaltrials.gov/ct/show/NCT00266487 (http://www.clinicaltrials.gov/ct/show/NCT00266487)

And it is not flawed.

Edit to add; I’m not a specialist regarding B vitamins and again, I can’t find the B12 liver stuff, but doc’s over here are careful with B12 injections due to this.

[Leif]

I concentrated on B12 because it was a deficiency in B12 that caused my nerve damage.
Myelin damage, if the levels are very low for a long time. But then again, you will have damage to the myelin sheath.

[Methylcobalamin1@msn.com]

As for the cardiovascular research including vitamin B12 (NORVIT);
http://uit.no/med-befolkning/6408/ (http://uit.no/med-befolkning/6408/)
http://www.eurekalert.org/pub_releases/2005-09/esoc-n090505.php (http://www.eurekalert.org/pub_releases/2005-09/esoc-n090505.php)
http://www.clinicaltrials.gov/ct/show/NCT00266487 (http://www.clinicaltrials.gov/ct/show/NCT00266487)

And it is not flawed.

Edit to add; I’m not a specialist regarding B vitamins and again, I can’t find the B12 liver stuff, but doc’s over here are careful with B12 injections due to this.
Yes, I read that it is a Norwegian study.

I'm just surprised that they gave such large doses of vitamin B6.

I'm also surprised that since B12 is known to relieve depression in many cases, or, conversely to be caused by low B12, that they are not more interested in its good effects.

I had thought that Norway was a country with a high degree of SADS... Seasonal... I forget the whole name, but depression due to the long winters.

I don't think you will be able to find the B12 and liver thing, because I've never heard of that. I read really a lot about B12.

I think if you look, you may find negative material on B6 and the liver.

At first when I read the abstract you posted, I had thought NORVIT was the name of a drug. So many drugs have names like that.

But really it's the abbreviation for the Norwegian Vitamin Trails...

[Methylcobalamin1@msn.com]

Myelin damage, if the levels are very low for a long time. But then again, you will have damage to the myelin sheath.
Yes, B12 is needed for healthy myelin sheaths on nerves.

But I think the nerve damage may be something beyond that. I don't really know. I just know that I got peripheral neuropathy from it, and major cognition problems, and depression.

I bumped into walls a lot after living in the hydrogen sulfide, and now that I've had a lot of B12 replacement, that has gotten better, so I think it repairs nerve damage even if the damage wasn't caused by the B12 itself being low.

[Methylcobalamin1@msn.com]

oops I accidentally got it posted twice so I'm deleting one.

Sorry.

[Methylcobalamin1@msn.com]

As for the cardiovascular research including vitamin B12 (NORVIT);
http://uit.no/med-befolkning/6408/ (http://uit.no/med-befolkning/6408/)
http://www.eurekalert.org/pub_releases/2005-09/esoc-n090505.php (http://www.eurekalert.org/pub_releases/2005-09/esoc-n090505.php)
http://www.clinicaltrials.gov/ct/show/NCT00266487 (http://www.clinicaltrials.gov/ct/show/NCT00266487)

And it is not flawed.

Edit to add; I’m not a specialist regarding B vitamins and again, I can’t find the B12 liver stuff, but doc’s over here are careful with B12 injections due to this.

I've looked at your links again, and remain amazed that they were giving people 40 mg of vitamin B6.

Also, now that I read it again, I think it says that the amount of B12 included was only .4 mg... that is not very much. that is about 400 mcg.

I have to go read it again because that seems unbelievably low to me...

Okay, I've copied the bit about how much the participants were given:

This controlled, double-blind, multi-centre trial will include 3750 men and women aged 30-85 who have experienced an acute myocardial infarction within 7 days prior to randomization. Participants will be randomized, in a two-by-two factorial design, to receive one of the following four treatments:

A, folic acid 0.8 mg plus vitamin B12 0.4 mg and vitamin B6 40 mg per day;

B, folic acid 0.8 mg plus vitamin B12 0.4 mg per day;

C, vitamin B6 40 mg per day;

D, placebo.

Is someone good at mathematics here? I think that the B6 dose was a hundred times stronger than the B12 dose. can you figure out how much the difference really was?

The results are spoken of as "B vitamins" -- I don't know, I think this is not a very good study.

They reported it on the news here, I am now beginning to remember. I had no idea that the B vitamins they used were so skewed in favor of B6.

For some people with a certain disorder Vitamin B6 can actually be dangerous.

I'm going to have to put something on my site about this study, now that I see what it was really like.

Plus, they were giving twiced as much Folic Acid as B12...

I wonder why they chose the combinations that they did. Have you ever heard?

[Leif]

I wonder why they chose the combinations that they did. Have you ever heard?
No, but there must be a reason for it in this tests. It was a specific study for a specific illness.

As for B12 I understand there are types of it, the one in your login name, metylcobalamin and also cyanocobalamin. The first one here is not stored in the liver, the second is and if some has anemia injections with cyanocobalamin does not have to be taken so often. The disadvantage is just that the body itselfe has to transform the cyanocobalamin into metylcobalamin before it can be used say for the brain if that is the goal for a person, say without any anemia.

[Methylcobalamin1@msn.com]

Oh, I see what you are saying.

I just did a Google on it, and you are right, B12 is stored in the liver:


Vitamin B12 (cobalamin), with folic acid, is necessary for the maturation of red blood cells and the synthesis of DNA (deoxyribonucleic acid), the genetic material of cells. Vitamin B12 is also necessary for normal nerve function. Unlike most other vitamins, B12 is stored in substantial amounts, mainly in the liver. The body's stores of this vitamin would take about 3 to 5 years to exhaust.


I haven't checked the two different kinds. I'm a bit slow. (cognition wise)

What I think, is that doctor's rely too much on the idea that it is hard to deplete the entire store.

Did I mention here how much my B12 dropped as a result of stress? 250+ points in just a day or two. It was major stress, but then, I think a lot of people are dealing with major stress.

My neurologist said it was supposed to be in all the tissue and muscles, and he said it took a long time to replace it... so I can see how it would also take a long time to exhaust it.

The thing is, when people have certain symptoms and then take vitamin B12, they find the symptoms go away. To me, it is important to try B12 and see if it helps. My neurologist told me that in the old days, before tests for B12, doctors prescribed B12 replacement, and if it helped then they decided that B12 deficiency was the diagnosis.

I think it is soooo important to keep track of symptoms ourselves. And if a vitamin can help, and it isn't dangerous... try it and keep track to see if it helps. Then... if it does help, how great is that?

I used to just trust my doctor... but now I know that my doctor may not really know very much about the things that are most impacting my health. For instance, they didn't pay much attention to the fact my mother had pernicious anemia. They were completely wrong about how only people who are vegetarians can be B12 deficient.

Maybe if I lived in the same town as my mother and went to the same doctor it would have been different, but... I don't live there anymore.

To me, it's just really important to learn about health and not just rely on what a doctor says.

[Methylcobalamin1@msn.com]

hi ddj--

unfortunately, there are lots of people here who suffer from neuropathic pain, and I'm sure some of them will chime in.

Here's what I know from watching my husband deal with it for the last 5 years:

It's usually triggered by light touch, like soft stroking.
It's hard to medicate, but not impossible. Bruce takes gabapentin (same thing as neurontin) and has also experimented with lyrica.
It's a good idea to stay ahead of it . . . if he forgets to take the meds, it can suddenly grab him, and then it takes awhile to get it to quiet down again.
It can change in intensity over time. The first couple of years, he was constantly having to be vigilant w/ the meds, and there were still times when it got the better of him. Over the last year or so he's been gradually cutting back as much as he possibly can and is down to about a third of the original dose.

(I'm typing this and thinking, omg, I'm speaking in years here. Years of living with this already gone by . . . it's weird. I remember when I first came here, how impossible it seemed that we would ever learn to deal with everything.)

Anyway, I'm sure others will jump in and tell you the exact neurological mechanism that causes the pain--my impression is that it's the sensory version of the thing that causes spasms and spasticity--partial signals through the injury site that the body misinterprets.

Hope this helps, and btw, good on you for the massage and range of motion. Your son is lucky!

Hi Kate,
I came back looking for a post I remembered here somewhere and was startled by your avatar...

It made me think of all the pictures on the news about the polar ice cap melting, and Greenland not being as thickly full of ice as it used to be.

I watched the pbs program by Moyers the other evening on Rachel Carson. I had no idea she was a well known scientific writer prior to publishing her book, Silent Spring. Nor did I really realize how hard the powers that be came down on her, or that she died of cancer.

Did you see that program on her?

I think there's very little that's unbreakable. Stress fractors in metal can break it.

[Methylcobalamin1@msn.com]

Myelin damage, if the levels are very low for a long time. But then again, you will have damage to the myelin sheath.
Leif, you used to have the photo of yourself, I think, for your avatar. It was nice to look at, the ones you have now are not so much. Those men have done so much damage in the world, (Cheney and Rumsfeld) and it was astonishing to me to learn Rumsfeld got his start under Ford who paid so little attention as he and someone else, I forget the other man, took over under Ford. (Was Cheney in the government before he went to head up Halliburton?)

[rybread]

I don't know if this matters anymore at this point, but when I start sweating it's from pain somewhere in my body, typically my bladder being backed up. It's a good indicator of autonomic dysreflexia and I take it very seriously when I start sweating.

[Methylcobalamin1@msn.com]

Hi,
Two questions: 1.) Is that you in the picture? If so, you look like that star on Desperate Housewives. :)

2.) That's very interesting about the sweating. I don't understand the long word that you used. But I sometimes wonder why I sweat when it doesn't seem as if it's that hot. I know I sweat when there's pain, like when I used to go to the grocery and be in major pain. But I wonder if there's anything similar ... maybe that word I didn't understand ... that's a sign of something even if there's no pain.

That may not have made any sense.