Hi there,
This is my first ever to post to anyone, I felt I must as I am just as frustrated too. I found out the end of 2003 that I was B12 def., actually pernicious anemia. I started taking B12 shots Jan 2004 at home myself and will for life.Unfortunately, the damage was already done. I was 39 years old. I couldn't believe it! I already had peripheral neuropathy, carpel tunnel, tarsal tunnel, optic neuropathy and working on bladder dysfunction. Not to mention what it was doing to my memory and confusion, fatigue, etc. etc. etc. the lists goes on. Did anything get better.............NO. Does it with SOME people..........YES.Unfortunately, it did not with me. I thought I was from Mars cause I kept reading stories of people feeling like they could fly just from taking B12 shots! Well, I am happy for them. I had to quit reading articles as they were not helpful for me. I silently started doing research on my own, never mind different neurology care I have been under ever since. If you haven't been told already, you will be told..... B12 carries the same symptoms AND damage as MS except MS has a lot of help out there and resoureces, WE DON'T. If I sound angry, I guess I am, I am frustrated. This disease can tear a persons life apart as bad as MS and other diseases, yet, it gets NO WHERE! It makes no sense why doctors still do not know how to treat it. For the record, I hope you will not be mis led as I was, if you are B12 deficient and try to take EXTRA B12 shots, your body is NOT going to accept it, it is NOT going to do you any good. You will not absorb it. There are, as you know, different types of B12 def. If you have the same as I , you can not absorb it. Believe me, I have tried this, it doesn't work.
It is July 31, 2007, 3 1/2 years I have been on the shots, my symptoms are worse, the neuropathy is a nightmare, today my neurontin was increased to 2100 mg per day plus starting Cymbalta for Neurapathy as well, not to mention the other 13 meds. I am on, thanks to B12 I felt strongly that I wanted to post to you as I could understand your frustration and I have never done this before and I can only hope that somehow we can one day see a difference in our own doctors here in our own country that do know more on this disease. It is treated like the old TB days! If you search on the internet, as I did recently, I just typed in " doctors that specialize in B12 Deficiency", and blood disorders. I came up with a few. You may have some luck. I hope you do. Neuro's and Internist are usually the best with this although most are limited. If you can ever find an older militray medicine outside doctor, grab him They have delt with a lot of varities! Believe me.I am seeing only military doctors as my husband is in the service, but one day I landed in the hands of a " military medicine doc" that is usually only for them, he helped me so much and got me on the path to walking and off crutches! But,they work on the outside as well. I know this was long, but I sure hope something in this can be helpful to you. Sugar coating things is not going to help you. If someone would have let me known what I was heading for, I would have probably handled it better. It was very tough and still is. The best of luck to you. I wish you well. Hang in there!
P.S. I chose "COMPLEX" because my docs. always say my case is always so complex lol, just like you say, I always got to try to laugh about this or I will go nuts take care!
COMPLEX B)

Thank you all for these comments of your experiences. My wife for the last month has had trouble with her mobilityagain, just when it seemed to be getting much better. Her tendon behind the right knee freezes, making it impossible to walk unaided. We've got a new wheelchair now after giving the old one away - we thought we wouldn't need it again. It's so encouraging to read your comments Rose, even if it takes two years to heal at least it is healing - my wife will be able to stand and walk down our hallway without bruising herself on doorframes, chair backs and cupboard corners at some point and it's great to know that.

Something to remember for all of us - people are saying they've been deficient for two years - I think you must remember this is a problem some people are born with. It takes vegans ( most of these will have the ability to absorb B12 ) twenty years to deplete their B12 enough to cause symptoms - so it makes sense that most B12 sufferers are 25 or older when their first serious symptoms start. If you think a normal B12 level is around 1500 + and most people who are receiving B12 have dropped below 200 - it's probably taken 20 years to get down to that level. Everyone will have different levels of malabsorption - meaning some people will take longer to get to these chronic low levels. In Japan - they treat anyone below 400 - 500 as defient.

(By the way, no offense to any vegans reading this ! It's just a fact that the highest levels of B12 are readily avaible in meat - if you don't eat it and haven't been told to take a supplement it will deplete).

I think it's really important to look back at early ailments for clues to this deficiency - before the level gets so low. For instance, as a child as young as 8 years old, my wife suffered lack of concentration, secret feelings of "not fitting in" and at the age of 15 became heavily anaemic and on/off depressed. It's worth ponting out, her Mum's B12 deficient aswell (diagnosed as Epileptic before discovering B12 deficient - B12 treatment has lessened the severity of her Epilepsy - go figure!!). I think she wouldn't have a great start in life if this is a familt trait - and if it's strongly genetically linked, surely the severity of the condition could get worse with each generation. With this in mind, my sons' B12 was taken and his level was 800 - at that time at school he'd been kept back in a catch up class but the teachers concerns led to him being referred to a Dyspraxia clinic ( another neurological condition!). We still haven't heard from the clinic - it's a lengthly process in Britain to go through the NHS - but our doctor suggested B12 sublingual at 500mcg per day. The argument is my wife was probably already chronic B12 when Daniel was growing inside her so he could have suffered development problems as a foetus - leading to a relatively low B12 and Dyspraxia. Taking the B12 has made a huge difference - his reading and writing came on leaps and bounds over a three month period - his teachers were amazed.

Any body else noticed the family links??

Rn; Matty, Rose and others;
Very interesting to read this thread; I fall in the category of "undiagnosed" b-12 deficiency for a long period; long story short - since the "progression" of tremor/balance issues (I was dx'd with Essential Tremor in Nov 2005), Neuro was calling for a complete blood work up to find something that might explain why I was getting worse as I complaining my lips had gone completely numb, followed by the tip of my tongue, end of my fingers, spots on my lower legs & feet and I had major sensory symptoms in various parts of my body. Neuro said bloodwork looked "normal". I was not satisfied and went back to my PCP (Internal Medicine) with test results compaining of symptoms and my partner noticed "cognitive" problems; such as simple recall or short-term memory issues. It was my Internal Medicine doctor who noticed my b-12 levels appeared "low"; at the time 218. He requested more blood tests and b-12 level came back at 177. Clearly, my b-12 deficiency could have been discovered the previous year! when complete bloodwork was called for my my then Neuro - I have been told it takes "years" for my tissues to get so depleted. I was tested and don't have Pernicious Anemia; it's metobolic - I no longer absorb b-12 from foods.

In May 2006, I started b-12 therapy (cyanocobalamin 1ml or 10cc); one shot per week for 4 weeks; dropping to bi-weekly; then monthly; however, symptoms were worsening; doctor moved me to weekly shots of 10cc. I saw immediate results after each shot (tremendous engery!) where I'd been complaining of always feeling "tired" for over 2 years at that point. It took over six months of shots (I moved to .5ml twice a week) for the feeling to return in my fingers/toes and lips but I've got Peripheral Neuropathy caused by low b-12 for so long; we're not sure the nerves will be able to repair.

I will keep reading this forum. I see a Neuro/MDS specialist with Emory Neurology (Atlanta) now for the movement disorder, ET - and I've been included in a b-12 study that being conducted by doctor in his research group (Dr. Evatt)......I also received the book "Could It Be B-12?" written by Pacholok, R.N. & Stuart, D.O. today - so am starting to educate myself as much as possible....I want to ensure I'm getting the attention to my b-12 deficiency and it's not being ignored because doctors are more focused on the Essential Tremor disorder.....BTW, was told in latest blood test results that I now have low Vitamin "D" (17); go figure!

My Vitamin B12 deficiency was over 2 years and I was hoping extra medications would assist in repairing the damage. Don't get me wrong, I don't mean mega dosing with cobalamin, but definitely not lowering the dosage like the new physician was wanting to do! I knew that wasn't going to be in my treatment plan....I was definitely frustrated that I could not find anyone here in the states that knew a whole lot about this syndrome. When it come right down to it, the United States is way behind the times even in its treatment plan of cobalamin, the World Health Organization recommends giving Hydroxocobalamin because it stays in the system three times longer than cobalamin (J Pediatr. 1998; 132(1):121-4 (ISSN: 0022-3476) Andersson HC ; Shapira E Human Genetics Program, Tulane University School of Medicine, New Orleans, Louisiana 70112, USA) But I could not even find a doctor in my area that even knew what it was! They were wanting, instead, to stick with the standard treatment, which they learned in med school and not be open minded with any new method.
I've got the book by Sally "Could it be B12: an Epidemic of Misdiagnosis" by Sally M. Pacholok, R.N. and Jeffrey J. Stuart, D.O. They are husband and wife. She had Vit. B12 in the 1980's and they researched this and was amazed on the lack of information and lack of understanding and willingness to listen from the medical community. It is a very, very interesting book. Sally assists many people.
I am interested in this B12 study that you are doing Ron. Can you tell us about it?
Med_help, Complex,Rose,Matt and Ron, as always....hang in there, maybe one day, the doctors will finally hear our outcry and listen and start doing some research to assist us...

Complex,

I can certainly relate to your frustration. I also incurred damage similar to MS, and have been coping with the fallout without the support.

Some people only stop the damage but do not improve when they get the B12. But it still is possible to improve, and you would maximize your chances for improvement by taking the methylcobalamin form of B12. And, of course, making sure you're getting all other nutrients your body needs to have optimum opportunity to repair.

I also wish someone would have told me what I was going to deal with. I could have planned and had it much better physically and financially, at least.

I cannot speak to what is or is not going on with you. But my second and third years of repairs were probably the worst, and that's saying something because prior to that was bad.

Wish we could sit and visit.

rose

Matty,

Many people are born with the seeds of severe B12 malabsorption later in life. And I am one who has family evidence of this. My mother malabsorbed moderately, I suspect my dad may have, I developed severe malabsorption, and two of my adult children developed severe malabsorption at a much younger age than I had. I spoke with a researcher, and he said "these things mutate."

Also I have found written material discussing the increasing severity developing in some subsequent generations (as my family illustrates).

I hope he will increase that B12 dose to 1000 mcg. If he malabsorbs severely, or is heading in that direction, that is a much better dose to insure he gets what he needs.

rose

Jon,

Thank goodness for your rare and wonderful doctor of Internal Medicine!

It does take years to become deficient, unless one is doing lots of nitrous oxide or has some very unusual problem.

What kind of B12 study are you in? What type of B12 are you getting? I hope it is methylcobalamin.

Chances are good that your peripheral nerves will improve, unless there's something else going on to damage them. The regenerate quite well, but it takes time, and things may be difficult as the central nervous system gets used to the differing signals (since when nerves regenerate they do not do so in exactly the same way original nerves were).

People who can't absorb B12 from food usually lack sufficient stomach acid. And, of course, if they progress to also lack intrinsic factor, they malabsorb from all but very large doses of B12. Lack of intrinsic factor is true pernicious anemia (not an anemia at all, as was thought in the 19th and early 20th centuries).

Do you have copies of your lab results? If not, I suggest you get them and keep your own records from now on. It can be very important.

RN,

There's been lots of research, and continues to be. The information just hasn't gotten to most docs (largely because so many editors of medical literature haven't been doing their jobs, and they continue to put out "information" that is decades outdated).

rose

Rose - yes, I have copies of my lab results; intrinsic factor is normal. Below is the info on Dr. Evatt that's available online:

Clinical Trial Vitamin B12 location and contact information

http://clinicaltrials.gov/ct/gui/sho...57B27F?order=6

C.V. for Dr. Evatt
http://www.sph.emory.edu/CRCA/graduates.html

My Neuro/MDS (Dr. DeLong - which I've been seeing for a year now) indicates my ET is greatly enhanced by the b-12 deficiency. He was a proponent of getting it under control to better treat my Essential Tremor, though he's not yet ready to rule out early MS. It's amazing to me how debilitaing b-12 deficiency can be. Since intrinsic factor is fine and I don't have pernecious anemia - what's the next step to explain the malabsorbsion? Should I ask for more tests? BTW, I take the injectible for of cyanocobalamin; .5ml 2x a week....Jon

Yes, B12 deficiency, when untreated long enough, can mimic MS very well if the patient survives that long.

Parietal cells should also be checked. Those two tests together show a high percentage of gastric (stomach) atrophy. They are not 100%, and the fact that your intrinsic factor test was normal does not mean that you are not experiencing atrophy and losing the ability to produce intrinsic factor.

The appropriate terms for the anemia you mention ("pernicious anemia) are megaloblastic and macrocytic. Pernicious anemia is the lack of intrinsic factor. Most doctors do not know that, and when possible their patients must teach them . A large percentage of people deficient in B12 do not have anemia, and in fact they are at greater risk of neurologic damage.

I'm confused. How can you be included in the study when you have had B12 shots?

rose