B12 neurological damage starts early
 

Hello, I am recovering from a long long term B12 deficiency that it took FOUR doctors and what seemed like an eternity to diagnose. The peripheral neuropathy began as numbness and tingling in my hands and feet. After awhile there was burning pain at the right of my spine and it turned into an electrical current that went into the base of my skull and made my face numb. The reason that they couldn't seem to diagnose my deficiency was that the labs showed B12 at the extreme low end but not below what they consider normal. The damage to my spine and brain did not show up on the MRIs. Because of that I was completely written off. I was told that I have bipolar disorder, irritable bowel, and to take a montly B12 shot. Now I am fighting to find the cause of the malabsorption, but even the gastroenterologist doesn't believe that B12 deficiency can cause that amount of neuropathy before the B12 level goes below that ridiculous low value. Somehow I will find the cause of the deficiency, but it has taken years and I have lost chances at the career of my choice. For anyone who has neurological damage and is/was not believed, you are definitely not alone. Unfortunately for me I now have a "label" in my medical file as not being mentally well because I came into the doctor's office with mood swings, mental confusion and memory loss.

awww lily..that label is awful. can your dr make a another note about that...to try and clear that up?

i fought and fought for my mother on something like that. idiot nurses gave her haldol when she was in the hospital for electrolyte imbalance. she was so low that yes...her mental state was off..and they wacked her out and almost killed her with the haldol. they also made notes that she was mentally ill. :mad:

those statements got taken off her medical records.

That is not unusual
 

Lily,

Unfortunately, since so many medical references are decades behind, and thus even most doctors are uninformed or ill-informed, that is not unusual.

When I finally got a diagnosis (after much central nervous damage had been done), I thought that the docs who handled my case much the same as yours were unusually negligent/ignorant. After much research and years of learning how few doctors know more than old myths about B12, I learned how widespread the bad information is.

I'm glad your here and are sharing your experience.

You can put something in your medical file, and then I encourage you to get a copy of the entire file for your own records. Also keep copies of all lab reports, etc., that you can get your hands on, because often they are misrepresented, ignored, and even disappear. It's a sad state.

You might find something at my website that you can use to educate the doctor and correct the misinformation in your file.

rose

That is a good idea - to get a copy of your records. I will do that.
This is the first time I have seen any information about anyone going through what I have . I am sad that this has happened to all of you , but feel much better knowing that I am not the only one.
I have had a B12 deficiency for a very long time. It was a year and 1/2 ago that it finally came up on my tests. I had not been able to feel my feet for 10 years ( since a spinal cord injury requiring surgery) The numbness and pain were increasing to the point that I Could no longer feel my legs and fell down 3-4 times a week, I couldn't sleep at all and the deficiency started causing other problems like loss of feeling and function of my arms and hands, mental problems and finally gastric stasis. It was horrible! But none of the Doctors I had seen believed me. Finally, tests for intestinal obstruction with no abnormal results caused them to look further. My level was 183. But they told me "Not low enough to cause problems" I insisted on starting injections, I did not even have the energy to raise my arms to wash my hair. After 8 injections of cyanocobalamin I could feel my toes again! I got more and more feeling back with each injection. But I still had the pain, cramping, spasms and what I can only describe as fireworks shooting down my legs. While researching the subject, I found Methylcobalamin. This changed my whole life. I started taking 5000mcg sublingually along with the injections. The pains began to reduce in number and strength within a few days. After talking with Pat from Jigsawhealth.com I started increasing the Methylcobalamin gradually to 5000mcg 4-5 times a day, along with his version of B complex (reasoning that you shouldn't significantly boost one B without increasing the others at the same time since they all work together) After taking these , it is like a miracle!!! I have absolutely no pain whatsoever. and I have full function of my legs and hands. You would never know that I had had a severe spinal cord injury. My strength is improving daily and my stamina is beginning to get better too. Many other problems have resolved as well, like no more tinnitis, no intestinal upsets, my skin is no longer dry and itchy, no more depression, the list is a page and 1/2 long. It is unbelieveable!! Yet with all these improvements, my doctors don't seem to be taking this seriously. After saying that they would love to see any information that I could find on the subject, they have not read a single thing I have given them. I know there must be thousands of people out there who would benefit from this information, but they don't seem to pay attention. I began to think that perhaps I was the only one, and that maybe they were right and I am a little bit goofy. But after studying the subject and reading this website-- I know I am not! There are others out there who are not being treated , and worse - being treated badly because we don't fit the information that they know! These guys are having a fit about how much I am taking , but it is working. I have not felt like this in years and years. I have my life back !! There are so many things I have missed that I can't wait to do. I would recommend to anyone that is contemplating taking this to "Just try it" It won't hurt you and the results are seen fairly quickly ,in most cases, from what I have read. And it is so inexpensive! Even with all that I am taking, it is costing less than $60 a month. And I no longer need all those expensive medications the doctors want to prescribe.(most of which only make you worse in the long run) It is definitely worth a try!!

I do have a few questions tho , If anyone knows the answer I would love to hear from you.
Since I am taking 1000mcg of Cyanocobalamin every other day , 5000mcg of sublingual Methylcobalamin every day and timed release B-complex with 1000mcg of Methylcobalamin 2 times a day, Why can't I back off the injections without getting numb toes? With this being an inferior form of cobalamin, I would think that I could stop injecting so often without a problem.
( I have had one source tell me that it is acting as a catalyst for the oral forms? Does this make sense?)

And my husband and kids are taking the oral vitamins too. They have the sublingual dissolve in about 15 minutes. I, on the other hand, always take about 1 hour to 1 1/2 hours to get it to dissolve. Why?

I am sorry this is so long, It is actually a VERY condensed version of the story. I believe I have had this since birth. And that my mother and grandmother had it also.

This is wonderful to have someone to talk to about this that understands! Thanks!

You are truly blessed that you have got back full function to your arms and legs taking your B12 supplement.
I on other had paralasys in my legs now it is in my arms and hands as well.
Although most of the other symptoms have more or less resolved themselves.

In my opinion, it may be coincidence, because improvement after long-undiagnosed deficiency often is a process during which symptoms worsen and wane while there is a pattern of overall improvement.

If that is not the case, you would be very unusual. There are many variables, so I would suggest you do whatever seems to work for you. :) I doubt very much that the cyanocobalamin can be a catalyst. It is not even usable until your body converts it to a lesser amount of the usable form.

rose

I hope this is not something that will return, I really feel blessed to have this kind of improvement

Oops! I just reread that dosage I posted. It should have read 1000mcg of cyano injected every other day, 25,000 mcg of methyl sublingually every day and 1000mcg of methyl twice a day in the B-complex. I know that seems like a lot. Maybe that is why I am so much better?

the methycobalamine miracle
 

there are many people that have told me about the B-12 miracles...
and I am one, it makes all the difference between horrible off and on's
involved in Parkinsons disease.
:grouphug:

My poor, little girl
 

I love my almost-nine-year-old daughter with all my heart. I'm not saying that most people don't, but I can quote one doctor at stating that we have "an incredibly close relationship." I've never forgotten that. It breaks my heart with all she goes through. It's really hard to be the tough love parent that has to fuss at her, when I know she's going through so much pain, but somebody has to do it, and God put me in charge of it.
C. came from a family with a bad history. Yes, I know that bipolar is genetic, so maybe I shouldn't question it. I've known since the beginning she had some odd behaviors, but in the beginning I thought I could help her beat it. Then she was diagnosed with bipolar. We "know" she has IBS though she hasn't seen a doctor for it. She truly suffers with bipolar.
Now, however, I'm hearing that she might be having side effects from Depakote. We've been knowing that her hair seems thin, but we never knew it could be related to her meds. Now I'm scared. That's why I got on here and tried to find out whatever I can.
I was AMAZED to find somebody who was Dx'ed with both bipolar and IBS! I'm a testimony to what vitamin B12 shots can do for you, if you can get somebody to give them to you! I get nerve pain down my leg, and I used to get shots for it, that would actually help.
I'm REALLY curious now if she's low on B12. Wouldn't it be WONDERFUL if we could get her OFF this terrible medicine based on simple things like vitamins! We tried the sugar thing. She's never really been in to sugar, besides a very rare exception. She gets stomach aches from sugar, so she stays away from it. But yet I hear it all the time, "You need to cut down on her sugar!" She isn't sugared-up; she's manic.
One of the posts asked why more people don't pay attention to simple things like this. I think because they miss it, unless they're searching! I never would have thought of vitamins, but when you said you had two diagnoses that my daughter does, THAT struck a chord! I'm running right out tomorrow and getting her on vitamin B12! I'll give it a few weeks, and then I'll try to re-find this place and give you an update.
Thank you so much for this info!

bipolar
 

Hi Jennifer,

Not just B12...

have you ever read about pyroluria... associated with B6 deficiency, zinc deficiency...AND bipolar and gluten/casein sensitivity (which frequently is the cause of IBS).

You might be interested in some of these links from The Gluten File...

Pyroluria

IBS, IBD, Crohn's

Depression, Anxiety, Panic

Also Nutritional Healing on Bipolar Disorder~
http://www.nutritional-healing.com.a...polar+Disorder

Cara

Depakote
 

Is hard on females...it can cause PCOS (polycystic ovaries) and other
hormonal disruptions. Not good for mood disorders.
http://www.psycheducation.org/hormon...polycystic.htm
PCOS affects insulin and sugar metabolism which can be very bad for mood swings.

Depakote also depletes l-carnitine which affects metabolism big time.
You can have blood tests to see if this is happening.

Also zinc supplements can help with hair loss, in some patients.

But Depakote also affects liver functioning as well. You are probably doing periodic liver tests.

You might consider discussing a change in mood stablizer for her.
Discuss this with the doctor. Options include, Lamictal, Tegretol, or
Keppra. This would be your doctor's decision.

Loss of feelings in limbs
 

Hello everyone, I was checking this site because I wanted to see about B12 injections, and noticed how so many people were having problems with tingling in their extremities, associated with pain, and complete loss of feeling.

Well...I am bipolar, and all of the drugs used to treat this disorder cause these, not to mention many other drugs on the market for other health issues.

I have had loss of feeling in all parts of my body, pins and needles, and my left side weaker than my right, to the point where I would limp. I have also had my eye site deminish from these drugs.

So I encourage anyone who has been on ANY drug at ANY time to research, and go to forums, and check out what other people have experienced.

All my tests came back inconclusive for nerve damage...2 years ago, but it is till going on....however, I have now decided to go the natural way. Too many things have happened to my body. I encourage you not to put up with side effects, or realize it is caused by prescription drugs. Most doctors do not even know what drugs cause what problems, only a few of the side effects they are aware of.

Most mood stabilizers (as for bipolar) can also cause a b12 definciency, and many other problems.

Was great to see the positive results on B12, I am looking forward to being healthy was again!

As I read through threads like this one, I wonder how long I was B12 deficient before figuring it out. I had complained of carpal tunnel type pain for years before I was diagnosed with it. I remember my mom teaching me to crochet and me complaining that it hurts my hands and she would tell me I wasn't doing it enough and that I was too young to have such pain. That was in my 20's. I know now that I had gluten problems then, so I am wondering if my neuropathy was in the beginning stages way back then. My sister was diagnosed with vitamin deficiencies at a very young age, maybe 6 or 7--of course, celiac disease was not thought of then, not for us anyways.

How do we know how much B12 we should be taking? Doctors only go by the standard levels and on my last blood test (the last one he checked my B12 level anyways) my level was 1277, of course I was taking a daily dose of 1200mcg of B12 then, now I take 2400mcg and feel the same. The progression of my neuropathy is slow, which I am very grateful for--yet, how do we know when enough is enough?

it is not only B12
 

but B6 too that you need for carpal tunnel.

I found only the activated form called P5P worked for me.

Hypothyroidism also contributes to carpal tunnel. Excess fluid is
deposited under the ligaments with low thyroid and this compresses the
area and pinches the nerves.

http://64.233.167.104/search?q=cache...lnk&cd=3&gl=us

You know Mrs. D--retaining fluid, can that be anywhere. The thyroid issue is something I am trying to get info straight to take to the doctor. My doctor said my thyroid levels were fine, yet when I listed them in the forums, i was told that they border on hypothyroidism. I have been taking my temp at random times now since Friday Mar 2nd. It looks like my average temp would be 97.2, going as low as 96.0 and never higher than 98.4. I'm told that a adrenal test is something I should ask for.

T4, Free 1.1
T4, Total 9.3
T3 Uptake
T3 Uptake 27.2
T4 Free, Calculated 2.53
T3 Total 140

I do not know if this test should also be done after fasting, if so, it wasn't. I had no idea they would test my blood at this visit. I returned for a 2nd blood test after fasting for cholesterol and a 2nd thyroid test, just to compare and someone in the office decided to not do the thyroid test as the doctor ordered because it had been tested in Dec.

When ever my carpal tunnel is mentioned, the doctor says it is part of my neuropathy. I have fluid pockets on both knee caps too, could that be connected, been there for 5 years now.

For many the dose of B12 does not show a difference in the short term. Generally, it is more of a long term difference.

Of course, one is not guaranteed that all damage will be repaired, but much often is over a long period of time (in those who have not been treated early). And symptoms can be so subtle for so long (and so confusing and seemingly unrelated), that frequently the damage has been occurring for much longer than one realizes until seemingly unrelated things begin to improve.

How long did you stop B12 prior to each of those test samples being drawn?

rose

Rose, I never stopped my B12, I was never told I should. The facts they leave out!!!!:mad: Most of the time, I didn't even realize they would be doing a blood test. I have been taking B12 now for 2 years and never stopped taking it. The first blood test I had here was a non-fasting test and my B12 level was 1277, so my doctor told me my level was fine, not a problem at all. Before he ran the test, he was telling me he wanted me to have B12 shots, after the test, he never mentioned it again. I have always thought that my B12 level is only supported by my taking B12.

I research and research and just can't find what works for me. My variety of food is very limited now because of my intolerances. I know I can't get everything I need from my food, it's just not possible. I have gained weight, which I am very unhappy about, I do not feel good. I even told Kev I am about ready to eat gluten again, if I am not going to feel good, I might as well enjoy my food!:mad: Which, any of you that know me, know I will never do that, yet SOMEDAYS!!!!!!!!!!!:eek:

Aha! They can't tell you what they don't know, and chances are 100 to 1 that they don't know.

That is not a very high level considering you took B12 right up to the test. If you had been at that level after stopping the B12 for a few days, the result would be a 99% indication that your stores were full and your body awash in healing B12, which would be a very good thing. But, in the case you describe, there is no such indication.

Regarding "too much," the better lab ranges don't even have an upper level, because they realize that "too much" is not an issue.

I would keep on taking the larger dose, and in fact I would take more.

Have you looked at thyroid, which is likely to malfunction in conjunction with B12 malabsorption or as a result of the damage it has done. Sometimes the thyroid recovers on its own, but sometimes it doesn't.

rose

Other supplements that are useful in this situation..
 

If I were you I would also read up on the benefits of adding n-acetyl cysteine, alpha-lipoic acid, and acetyl-l-carnitine to your supplements.

The combination of all three can help repair and protect against some kinds of neuropathy and in general, they help protect everyone against a host of different medical conditions that can be caused by environmental stressors.

The amino acid arginine also helps repair nerve damage.. And also make sure to take fish oil, thiamin, and other B-complex vitamins.

Also, anyone who is having neuropathy issues, you should check for hidden *mold* in your environment. Even if you don't smell or see anything, it can be hiding inside of walls, attics, basements, etc. Spore counts may not show anything, but the mold toxins persist as a coating on tiny fungal fragments. Then the normal motion of air through a building can spread it everywhere - it can coat your possessions and cause major inflammatory issues that can ruin your health and send your immune system into an inflammatory nightmare.

Once they enter your bloodstream via inhalation, dermal absorbtion, or ingestion - (Inhaled toxins are very effective but also 30% of inhaled mycotoxins end up in the stomach as well) they recirculate in your bile and they can damage your liver, kidneys, gall bladder, stomach and GI tract, as well as your thymus, pancreas, brain, eyes and immune system.

They can cause lesions in your brain, which show up as 'UBO's on your MRI.

Often, this causes memory problems, chronic fatigue, etc. And much more.

Mold toxins can be very destructive of your health and they can persist for a very long time after the actual mold growth has been 'killed'. For decades or even longer after a water intrusion issue has been fixed. Once your body goes into an inflammatory state, recognizing what exactly is setting the inflammation off is hard because the inflammation lasts a long time because the toxins are low molecular weight and they permeate your entrire body, and store up in your fat. You can get them out with cholestyramine but often they have already done a lot of damage. And you also have to get out of mold completely.

Mold and even the dust of old now-dead mold needs to be physically removed, not just covered up and hidden.

:eek: I live in a basement apartment:eek:

And Rose, yes I have been worried about thyroid. I posted my numbers earlier in this thread. The doctor didnt think thyroid was a problem, but I am not so sure.

Most doctors know little more about thyroid than B12. It can take a very long time to find one who will diagnose you correctly even after you learn the narrowed "normal" range, etc.

Oh, I see that you did. I don't have those ranges in my brain. I only remember that the TSH most think is fine is not. The fact that you got the other tests is remarkable. Most can't get them to do them.

Mary Shomon thyroid placed in a search engine will get you loads of info.

rose

wow
 

So glad I found you all. Our experiences have much in common. Anyone found a correlation between long-term b12 deficiency (like almost 20 years of being told I was a hypochondriac) and epileptic-like condition? I am sooo sensitive to motion and light. Am going through a battery of testing, but it's getting pricey. Wondering if I should just go it alone like I have been? I'm just thrilled someone finally listened to me, that I have feeling back in my fingers and toes, that I'm healing somewhat normally (my once OK skin looks like it could hold a day of rain.)

there is
 

a connection between gluten intolerance and malabsorption
of B12.

Then there is the further connection between gluten intolerance and seizures.

Your link may be gluten intolerance, causing the low B12.
So I would investigate that.

http://neurotalk.psychcentral.com/thread1872.html
If you go to the link in The Gluten File... there are papers illustrating this link.

Thanks
 

This is all so fascinating and makes perfect sense. Have realized a gluten connection with other symptoms for years, but I had never run across this. My 15 year old daughter is just starting up with this and is now gluten-free, receiving weekly B12. Hers is a brain worth preserving. Thanks again.

I'm glad I stumbled on to this site..... I just spent the last 3 1/2 years thinking I was going crazy and just excepting that I would never feel good again. It's a very funny tale because if it was not for the loss of my health insurance I would still be living in dailly pain.

I was on PPI for acid reflux and my doctor told me that I could be on them as long as I wanted. They made the reflux go away but longterm use can cause b12 absorbtion problems as I now learned. Not to mentioned the side effects to PPI can be simmilar to some of the B12 problems. Dizziness, conentration problems, memory loss and recall issues, mood swings, aneity and dpression....the list gose on.

I would feel exasuted all the time, I would wake up in the morning and feel like I awful. When I exercised I just felt worse. I would tell my doctor and he just wanted to put me on Lexapro...WTF!

Anyway, as I mentioned, I went to walgreens to fill my prescription and when they told me what the cost was going to be, with out insurance, I said I would get back to them. Well it has been to weeks and I feel much better, the reflux sucks but I can think, my muscles are relaxing and working out actully feels good. I don't feel like I'm going to fall over and I want to spend time with people. My wife says it like I woke up.

So been taking a time release b complex and slowly working my muscle and mind out. What a nightmare!! I hope no one else ever has to be robbed of their life like I have been...

It is a shame. They call it mental illness. They call it nothing. It is not nothing. It is not mental illness. It is so easy for doctors to label anything and everything as "nothing" or as "mental" by just not looking.

No, you are not going crazy... don't accept that you'll never feel well again. Scratch "crazy" and just below the surface you find the medical issues.

A family member also had burning neuropathic pain, fatigue, abdominal issues. Her cognition and mood was affected. That was called nothing and mental also. And that was a child. Another of the children they said had ADD and put on a stimulant and she went bonkers. The doctors didn't stop to question what physically was going wrong with these children that they had these problems. (If parents are searching, see www.itsnotmental.com blog info)

B12 deficiency and its symptoms can be insidious. But there are a host of problems that can contribute. Methylation of the B vitamins, or the gluten problem causing malabsorption... or both. There can be more than one problem.

I'd get an extensive nutritional profile. There are many labs that can do this. Lab Corp, Quest Diagnostics... and some private labs like at www.Genovadiagnostics.com, www.greatplainslaboratory.com, www.lef.org and many more... or even use a combination of them for different things.

Perhaps you would know, how long to completely recover from vit B12 deficiency?

recovery...
 

I recall that rose, who is the original poster who brought B12 issues publicly to this board and it predecessor, said it was taking years for her to recover.

If you have severe damage, recovery is slower, and may not be complete if nerves have actually died.

For example in Japan where the terrible accident occurred with Vioform (clioquinol), people were permanently damaged, and blinded due to low B12.
http://www.multinationalmonitor.org/...mm0493_11.html

This devastating accident led to Japan being very aggressive in treating low serum B12 levels. They typically treat below 500-550.

So I would say recovery depends on how severe the damage has become.