Don't take B12 Def lightly...

[Cry Tears]

Several years ago....2 to be exact...I was near death.
I was so fatigued I couldn't even sit in front of my computer.
My dear husband got a laptop for me so I could entertain myself while he worked in the next room.
I was unable to even do my own personal grooming and had someone come in several hours a day to help me when my husband was too busy with his work.
I spent the entire summer laying in bed only getting up to use the toilet, and when I did I didnt even have the energy to flush it!
I'd crawl back into bed, hubby would come in to fluff my pillows, give me fluids and try and meet my basic needs.
I had Peripheral Neuropathy from head to toe. My lips burned as if they were sunburned.
When I did walk my balance was so off I walked "drunk" hanging onto anything I could to keep from falling.
I did use a rolla-walker when I had medical appointments..thats if and when I kept them.
My husband drove me to them and I always went to them wearing my PJ's hair unbrushed, teeth unbrushed as well....I was that weak and fatigued!

I saw numerous Neurologist, gastro docs and even spent over $5,000+ out of pocket for a very saught after naturopath/chiropractor doctor who did every test possible, from fecal testing that cost $750 just to mention a few hokey pokey testing....She gave me accupuncture, massage, aroma therapy....(Aroma therapy??? A fart did more... than smelling daisys I was about to be pushing up!)
From Late October thru mid April I "drug" myself the 40 mile round trip twice a week to see this quack doctor who did nothing more than drain my wallet!

She promised I'd start feeling better soon once my body was rid of the intestinal "worms and parisites"that infested my colon. What is odd...all the colonoscopies I've had, and having Crohns disease I've had many...each time the pictures show a very clean pink colon.

I took the home brewed tinctures, formulas, Liver cleansers. I had numerous body adjustments....and anything you can think of to rack up charges!
Nothing she did helped and I only continued getting worse.

I was so confused, depressed and brainfogged. I was beginging to wonder if I was "cracking up", after all, the other tests doctors had order proved nothing was wrong other than my known illnesses such as the years (20+) of irritable bowel later diagnosed as Crohns, Fibromyalgia and now Periperal Neuropathy. T
hese diseases are bad enough, but nothing like I was feeling.



By early spring I was too fatigued to drive and my health really began to decline. I told my husband that I felt I wasn't going to live that much longer.
My spine began to hurt as well...I couldn't put my chin to my chest without it feeling as if I was being shocked.
It couldn't be much worse.

I was ready to give up. No one had any answeres nor did any of the medications offer any releif.
I even considered ending my life. I couldn't even cry! Why go one like this?
No one gave a rip about me...and I knew they thought it was all in my head, except those who'd known me during my 2+ years of an anemia nightmare when I suffered from an intestinal AVM (anuerism like mass) and bowel resections due to Crohns.

When I got the lap top I'd try and fumble through web sites that addressed Peripheral Neuropathy. A nerve conduction test and EMG proved I had a moderate sock glove pattern although my intestinal area and body was not tested....I'd had enough poking and zapping, what did I have to prove!

I wanted to know why I had this on top of all my other list of growing problems. I could hardly comprehend what I'd read, but I kept trudging through.
2 years ago, back in early September I found this web sight, Braintalk.org and made my first contact with Rose. She suggested I use Methylcobablim sublingual B12 by Jarrow. Dear hubby made the first purchase on Sept 3.
By Sept 10 my life began to take a dramatic turn. Wow!
My B12 level had been checked earlier that spring...it was 232...was told within normal range:eek: This was said/done by Oregon Health Science Neurology department under a very errogant resident. Stupid idiot!

I have nothing positive to say about ALL the specialist I saw desperaly seeking help. They failed me miserably. Shame on them.
Didn't they even think about my missing 3 feet of small instestines and having Crohns disease be a tiny clue that perhaps I may need some B12?
When ever I think about how I suffered, it angers me....I don't need this!

It's not been an easy road back. But I found out what was wrong by doing my own research along with the help of other knowledgable people here on BT. I can't run any marathons....but I probably could walk a few!:p

If you are having some of the symptoms listed for B12 deficiency...please do yourself a favor and take the advice here that's given freely.

And don't stop taking it thinking you are all better....and don't stop taking it thinking it's not helping. You never know!
It may take weeks, perhaps months for your body to start healing.

And while your body is making repairs you may feel worse. But keep in mind....you will get better some day if B12 deficeincy was part of your problem. It can't hurt you even if you take a boat load!
But make sure you get the proper kind. You don't need to get the painful and expensive injections....all you need is the sublingual Methyl B12.

Educate yourself as much as you can regarding this very important vitamin and share this information with anyone who'll listen.
Perhaps you may save someone from a lot of suffering.
I sure wish someone had told me before I became so ill.

You want to hear a real shocking aspect to all this?
I would ask each and every single doctor I saw if this could be related to a vitamin and or mineral deficiency due to my having intestinal surgery and over a 2 year bout with severe anemia, lowest hemaglobin being 5.1 hgb! Thats near dead! One doc told me when I went to the ER that I was having a panic attack and REFUSED to do a simple blood test. I passed out driving my car with grandkids in tow....a different doctor took a blood sample where they discovered I had some sort of either massive bleeding or Leuekemia! It took nearly 3 years to find the AVM.....was found only by accident.
Each time I'd ask about a deficiency of some kind, they were adamant I was not! How scary is this?
I do hope anyone reading this finds an answer.
I know I finally did!

Blessings to all, Cheryl

[Persevering]

Thank you for that posting.
My story is not as dramatic, but maybe one of interest to many.
I suffer from migraine headaches and this was coupled by horrible fatigue and memory loss.
I had some other minor problems, but the fatigue and memory issues have been worsening over the last several years.
My B12 test was a bit higher than what you posted, also considered in the normal range, yet my Dr. insisted that I take a mega dose, etc.
At first I didn't want to take it, but he persisted.
Initially, he gave me an inection and I followed it up with 1000 mcg of B12 daily. I'm absolutely amazed at the results.
First of all, at the time of the injection, I was in a migraine cycle.
This means I was getting almost daily migraines.
This stopped.
I'm still having problems, but that nasty cycle ended.
I went through a period of fatigue again after the shot, but
after about a week taking the tablets (1000mcgs daily) my fatigue improved noticeably.
It's been about three weeks now and I am sooo much better.
Fatigue better; memory better.
My fatigue level is better than it has been in years.
The only difference is the B12.
I'm convinced that our tests are inaccurate and that what is said to be the proper level is not necessarily so.
For all of us with health concerns...this is something to read more about.

[B12Bob]

My experiences are similar. In the late 90's I started having balance problems, memory problems and couldn't concentrate. My family doctor didn't have a clue what was wrong, so he sent me to a neurologist. She couldn't find anything wrong. My problems continued to worsen. My wife's psychiatrist heard my symptoms and said it sounded like a B12 deficiency.

I had been having digestive problems for years and saw a gastroenterologist about them. I mentioned the B12 theory to him. He tested my levels and although it was in the "normal" range he gave me a prescription for B12 and taught me how to administer the shots. Getting the B12 was was amazing. A lot of problems cleared up or lessened.

His diagnosis was SIBO, which he tried to treat with Cipro and Flagyl. He gave up after three tries and sent me to an endocrinologist.

This is where my faith in the current medical system began to break down.

The endocrinologist sent me to another gastroenterologist who said that there was no way I could be suffering from a malabsorbtion problem because I was too fat. OK, I weighed 220, down from 260 for no reason, and I guess I was still fat. He also said the first GI guy was an idiot. He also said I didn't need B12 and neither he nor the endocrinologist would write a prescription for it.

Two more gastroenterologists were unable to find a problem, my internist said B12 was just a feel good drug and wouldn't prescribe it.

Finally I got a new internist. I described the gastro problems that I had been having for 10 or 12 years and how B12 injections had helped my neurological problems. I also said that I knew what was wrong. When she asked what I said "I'm not telling you. Have you ever tried to tell a doctor what was wrong with you?" She laughed and actually listened. She started B12 shots and the results were again amazing. She was unable to successfully treat the SIBO though.

I have since found a gastroenterologist, who teaches this at DUKE and is interested in diagnosing problems instead of just running tubes into each end of your body. He listened to the unabridged version of my story, tested for the things that had been speculated about and a few of his own theories. The result for all the tests were negative, except for one. The hydrogen breath test showed that I had SIBO. An intestinal problem that blocks B12 absorption and the absorption of fat soluble vitamins.

Having been back on B12 for 4 months I am doing much better. I noticed small things at first. One day I discovered that I was holding the towel with two hands while drying my back after a shower instead of one hand on the shower rod and the other trying to reach my back. The other day I drove up to the house, went in, turned the TV on, sat in my chair and started flipping channels. I glanced out the window and noticed that the car lights were still on. I figured that the lights weren't on automatic, so I got up, went back to the door, opened it and the lights went off. To understand the significance of this you have to understand that earlier in the year it was a challenge to get to the hand rail two feet in front of the car before the lights went out. I can now swing a golf club again without falling down and can follow the plot of a TV show.

Sorry, this really was the abridged version of the story.

[jcc]

Great idea to share our stories.

The very sad truth is that most doctors are simply unaware that B12 deficiency can cause all of the serious problems it can. That is why people like rose, and myself and others like you all, take the time to tell our stories, and educate PATIENTS about it.

It took 3 years and 8 doctors to even consider testing me for B12 deficiency, and as I've met with so many other "B12ers" over the years through BrainTalk, my symptoms were very similiar to others. But the doctors stood around scratching their heads like nobody had ever complained of such things. I also had symptoms that crossed several specialties, and these things were coming upon me in a flurry. I kept telling each specialist about the other things going wrong, hoping one would put it all together. That only served to make me look like a hypochondriac to them, but I knew it had to be all related. I was falling apart from head to toe, heart to brain, and everything in between.

What took the doctors 3 years to find, would have been accomplished in 5 minutes had I found rose at this forum first.

Thankfully, the doctor who tested me realized that a low NORMAL B12 could be problematic, as my level was 294 (150-1100). Many would be turned away at that point with a 'clear bill of health' :rolleyes: :mad:. Still, when they called to let me know that I should take Mega Dose B12, they never impressed it upon me that it was the CAUSE of all my symptoms. I thought it was an incidental finding, or perhaps a cheap attempt at a placebo fix. Thankfully, that is when I stumbled upon this forum and I learned everything I know about B12 from rose!!

I also had the chin to chest thing, got disoriented when out driving to places I'd been going for years, and so many other symptoms. My memory still suffers :(.

Cara - My B12 Deficiency symptoms (http://jccglutenfree.googlepages.com/b12deficiencysymptoms)

There are many causes for B12 deficiency. One of them, something else doctors know little about, is Gluten Sensitivity/Celiac Disease...an autoimmune disease causing malabsorption that can cause neurological symptoms (among many others) due to immunological or nutritional factors. There is a huge potential for false negative testing on this, just as with B12 deficiency. Check out The Gluten File (http://jccglutenfree.googlepages.com/)for more information on that.

[Firebird]

Cheryl,

Thank you for sharing this. I have been searching for answers to my undiagnosable health problems for 6 years, and this is definitely worth checking out. A couple years ago my neurologist said I was "low normal" B12, but maybe the supplement I tried wasn't enough, or wasn't a good brand....???

Can you help me find the "Methylcobablim sublingual B12 by Jarrow" you mentioned? I looked on Jarrow's website, and all I can see is lozenges. Is that the same thing? I don't get any results on the search engine. Is it spelled correctly? Do you know where I can purchase it?

Thanks for any help you can give me,
Firebird

[buriedinbooks]

Firebird...I get mine through iherb.com. When you get to the site do a search for methyl B. These are small lozenges that melt under the tongue.

Thanks goodness for Methyl B12 ... and the people from Braintalk who directed me to them. Works wonders for my PN.

Have a good day...Carly

[Buttons2]

B12 has also saved my life. Since I've told the story so many times before, I'll just keep this brief.

Only doc that ever tested me for B12 was my first neuro,my level was 900,my PCP told me to stop taking my multi-B vits & Centrum!:eek:

At the time I had very severe full body myoclonic jerks. I was a freak! Severe fatique,lost my brain function,depression,at times used a walker to get around!

Joined BT in spring of 04, discovered that not all B12 is the same. Got me some of the Methyl pills & have written over & over with how much a simple,cheap pill turned things around for me.

Never trust the blood test results is my motto. I was at death's door & went through alot of expensive tests,different doctors,etc. The ONLY possible reason I've seen so much improvement is because of the B12.

Every now & then I go off all my vits just to test my theory & within days/weeks I'm right back to barely able to walk,carry on a conversation & fall into the black pit of depression.

I'll never be 100% healthy again, I accept this now. And I've just given my doctor the heave-ho. We are what we eat! Doctor's are ignorant about nutrition-probably not entirely their fault but we are the one's who suffer from this neglect.

I get my pills from Vitamin World, they are 1MG. Be sure to take folic acid also! Years ago I went to Canada to get folic acid cause the dim wits thought taking it (unless you were pregnant) MASKED anemia! Duh....

Looking back on my childhood I probably could have benefited from B12 then, I used to have to drink awful iron supplements,would fall asleep in class,etc.

Maybe we need a B12 awareness bracelet??:D

[razzle51]

I was told to take B6 . I suffer from Chiari and syringomyelia . Can yu explain alittle about the 2 B6 AND B12. thanks

[jcc]

Razzle,

I don't personally know a lot about B6 deficiency, other than my daughter really needs extra B6. Too little (or too much) can cause symptoms of neuropathy. It is also associated mood...anxiety, depression, panic. B6 deficiency can also be associated with seizures and migraines.

They say a good test for whether you need more B6 is dream recall. If you don't remember your dreams, you need more. This didn't hold true for my daughter (even though we know she needs more through various testing). She had sleep disturbances of much too vivid dreams, sleep walking, etc., and with the B6 she needed... she slept peacefully.

I do have some sources of information for B6 and B12 in The Gluten File (link is bottom right column). You should be able to find Rose's info here on this forum, and I also link to it in TGF.

Also, here are a couple of other sources you could check for info on B6/ B12.

Linus Pauling Institute - OSU - Micronutrient Information Center (http://lpi.oregonstate.edu/infocenter/)

PDRhealth (supplements) (http://www.pdrhealth.com/drug_info/nmdrugprofiles/nutsupdrugs/index.shtml)


In general, most people don't need more than 50-100mg B6 unless there is a special need for more. My daughter was doctor prescribed 200mg's. There is safety data listed on my website.

B12 is often recommended for anyone with neurological problems. It is especially important in nerve function and with our immune systems. Can't really get too much B12. B's need to be balanced, so a B-complex is important when you are taking high levels of other B's separately.

Hope this helps~

Cara

[Cry Tears]

Hi all...to answer your post regarding these deficiencies, Rose is very knowledgable regarding these.
Please read everything she has posted as this is the best information you'll find anywhere on the internet.
She also knows where to find the proper B12...I've read the Jarrow brand is very good...and have read it can be purchased from iherb.com.
I beleive educating yourself and not taking these deficiencies lightly will do well for you health. Doctors have little time now days to cover all these "simple" issues as well as update themselves as pertinant information is put out via their numerous informational journels.
So....we must be responsible for our own bodies because no body loves you more than YOU!
Blessings, Cheryl

[Firebird]

Thank you, Carly, I was able to find those.

Firebird

[Cry Tears]

I dont know how to bump up a thread.
These stories need to be kept active so others can beleive what is being told by Rose.....that B12 deficiency can mimic terrible diseases and doctors aren't catching this.
So if you know how to bump up a thread...please do so on this one. Thanks!

[rose]

You just bumped it up, Cheryl. When a thread is posted to it goes back up to the top. :) Thanks.

rose

[dorvad]

My B12 story is a long story, I had been having difficulty getting up from a seated position for a number of years, and then when I was driving my car my legs felt very heavy and numb, and then I also started getting pins and needles in in my legs feet and arms then my balance stated going funny, and I was very tired.
This would probably cover a period of about 7- 8 years before I was diagnosed.
My diagnosis came about after being admitted to hospital as an emergency.
I was lying in bed and I was not aware of my legs or the ability to move them, then I started having severe tremors down both legs.
In hospital they were unable to diagnose the cause of the problem until they ran some tests, they new it was a myleopathy but were unsure of its cause.
After exaustive testing Xrays , bloods, bone scans MRI etc.
The consultant neurogist asked me to do a couple of things
1. Feet together stand up and close my eyes, I fell over.
2. Sit on side of bed fold your arms across your body and get up I could not.
The blood tests showed I was severely deficient in B12 thus causing Subacute Combined Degeneration of the Spinal Cord.
I have to have injections every 2 weeks but the damaged done to the Spinal Cord cannot be put right.
So now I suffer from Spasticity, but the biggest problem is that I often take short term paralysys / paraparesis of my legs and as I said it can happen at any time and in any place, and because my muscles are aslo severely weakend getting up from a sitting situation is very difficult.
Saw my MD today and he is arranging for me to see another Neurologist who he reckons will be able to better explain what is happening to me and the likely outcomes, it would appear that my condition is something rarely seen in people and is the worse he has seen with my condition.
I try not to let it beat me, and I will do as long as I have the strength and the support of my loving wife, who is also my full time carer.
Don’t let anyone tell you that being B12 deficient is no big deal it is big time.

[B12Bob]

I got out of a chair without using my hands and arms for the first time in years the other day. I may have overdone it as it was a few days before I could do it again because of muscle soreness. This is six months after beginning regular B12 supplements.

[rose]

In your case, I would rejoice at the muscle soreness, which it sounds like you are doing. The only way some of us can make a muscle sore is to injure it-- can't by working a muscle that wont work. We have our ups and downs, but they do not correlate as your experience does.

I'm so glad that you are progress. :) Sounds like you were treated late, but not nearly as late as some of us.

rose

[Cry Tears]

That even though you're taking the B12 for some time...that the repairs being done can feel like you're going backwards instead of foward.
For instance....last week I began having my loss of balance issues. Once again having to hang on to anything to assist my walking.
Gosh...where did I leave that Rolla-walker? Probably down at the barn collecting cobwebs! The horses having fun with it?
Anyway....these always scare me...but then I keep telling myself what Rose has reassured me about body making repairs can often feel worse than before.
Thankfully it only lasted a few days, till another problem popped back up. But now I'm feeling back onto the road of better days.

Oh...I just wanna scream...a poster wrote about his doctor saying B12 was a feel good drug...if so...then why not! Why on earth would a doctor deny a patient something that made them feel good? Beats me...and when I hear things like this I just wish I had a magic wand make all those bad doctors feel what I feel...see if they want a feel good vitamin!

And don't forget to take the other B's along with your sublingual B12!
Blessings, Cheryl
PS...here's an actual photo of what B12 sublingual looks like!

[B12Bob]

.....a poster wrote about his doctor saying B12 was a feel good drug...if so...then why not! Why on earth would a doctor deny a patient something that made them feel good? Beats me...and when I hear things like this I just wish I had a magic wand make all those bad doctors feel what I feel...see if they want a feel good vitamin!...


This doctor is one of the most highly regarded endocrinologists in the Raleigh area. His opinion caused other doctors to ignore the symptoms I was having and deny B12 treatment. I find it odd that when my feet and legs were swollen they were quick to write a script for Lasix, but for B12 related symptoms they ignore them.

This brings up another problem I have with the current medical system. For every set of symptoms you see, there is an underlying cause. Throwing Lasix at swollen feet did nothing to fix what was causing the symptom. My b1 was checked by a different doctor and found to be very low, so I was put on B1. About a week later my swelling went away.

[rose]

Unfortunately, it is very easy to find prestigious doctors, even if prestigious institutions, who operate on mythology where B12 is concerned. If they consulted a good, relatively up to date medical textbook they would be ashamed.

rose

[B12Bob]

Unfortunately, it is very easy to find prestigious doctors, even if prestigious institutions, who operate on mythology where B12 is concerned. If they consulted a good, relatively up to date medical textbook they would be ashamed.

rose


The problem is that they wouldn't. The good press that they received in the past has gone to their heads and they are now GODs, at least in their own mind.

[MotherMoon]

Keep looking. You can find a good doc. Reward him/her generously when you do. The "best" (by whose standards) is not always the most up to date or caring. We have a couple of docs here who are very up to date in their field but have the warmth of a brick wall on a winter's day.

[nopain]

What is it exactly Doctors do besides bill?

The underlying theme in all these stories is arrogant egotistical physicans who are plenty quick to dismiss just about everything, but they find a way to bill you full tilt.

The only saving grace these days is we can research our own problems on the Internet and at least have clues to follow (clues the Doctors so conveniently ignore).

Doctors seem to be entirely clueless when it comes to anything dealing with nutrition. Until this year I had not ever heard of Systemic Enzymes or B12 Deficiency. And I didn't hear it from a Doctor.

[B12Bob]

The problem with a lot of them is insurance. Insurance companies have effectively limited what doctors can diagnose to a statically limited set of problems. If your problem isn't one of the check boxes on the insurance form you are going to be trouble for the doctor and his/her office. If they diagnose something off the form it will be kicked back by the insurance company and extra, non billable time will have to be expended on your case.

Another insurance induced problem is that doctors get paid more for doing procedures than talking to a patient. I have seen 5 gastroenterologists in the last five years. All but one has gone straight to tubes up my rear and down my throat with limited time spent on office visits. One, a professor at Duke, actually took the time to listen to my symptoms and have tests run which finally diagnosed my problem. He is the exception, probably because he finds his profession challenging, not just a source of money.

Then we come to my last theory. I think a lot of bright kids end up practicing medicine because it pays well. They were smart enough to pass the exams, but have no aptitude for the problem solving that should be part of the profession.

[mrsdoubtfyre]

There is sort of a reaction formation with doctors today regarding B12.

Back in the old non-techo-advanced times, when people complained of feeling
tired, weak, tingly, etc, a B12 shot was standard. I can remember getting
them when I was 21 and fresh out of college!

Then the AMA published guidelines that this was hokey medicine/quacky..etc
and not to be tolerated any more. So doctors over-react now, and think ALL
B12 is just a crock...a crutch. Somewhere in the middle is the TRUTH, and we have to yell and shout to make them listen and find it now!:(