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.

those statements got taken off her medical records.

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?

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.

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!

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