New here with B12 Deficiency...Answers, Advice and Support Needed!

[Abbie323]

Hi All,

I found this message board by googling it and I am so glad I did. It seems like you guys have a lot of great support and feedback for one another and I am equally in need of your help.

I am a 23 year old female with no previous health issues. About 5 months ago, I basically started feeling bad and it got progressively worse. I had some blood work done and my doctor said my b12 was low and to take vitamins. Fast forward 4 months into the future when I had my blood work transferred to a new doctor....he looked at me in shock. Turns out, the doctor the first doctor didnt even pick up that I had a deficiency when the test results showed me b12 level at a 78!!!! What is frustrating is that because that stupid first doctor missed my b12 deficiency (he thought I had syphilis...jerk) I have probably spent $2,000.00 dollars going to the ER, having cat scans and MRIs, having ultrasounds for DVT, trying tons of meds, going to see so many specialists....and that is nearly half a year that my symptoms were able to get worse and potentially more permanent.

For the past 3 weeks, I have been doing 3 shots a week and I start going to one shot a week next week. I have 5 doctors appts next week. We tested everything last week to see if we could find the cause and we are also going to retest the b12 next week to see if there is progress.

I need support though because I still don't feel better and my symptoms are out of control. I basically feel like a 90 year old woman (I am sorry if I offended any 90 year olds out there). The worst part is, I have no support system. I have people that care, but don't understand at all...and then my parents think it is all anxiety and the symptoms are all in my head.

One of the hardest things about dealing with this is that the symptoms are not clearly defined. Some days, I will feel certain pains or sensations that I can't even describe...and it is terrifying. Another thing that is so difficult is that I am a 23 year old that is at a very normal weight, with no previous health problems, considerably active, normal diet, no drinking or smoking or drugs....and I don't know anyone else like me that has something like this. It just scares me more and makes me feel all alone.

I will type out a list of my symptoms and a timeline of events if anyone needs more information to give me advice, but I just want to know that there are others out there that I can talk to. I am getting so depressed and scared at this point and I at least don't want to feel alone anymore.

Thank you all for listening. I hope to hear from some of you soon!

-Abbie

[rose]

Few people with these strange symptoms and physicians who are uninformed have any support, unless they find a group like this. I felt so alone for a very long time. Eventually people began finding the B12 information here (on a previous version of the BB) and we developed an informed support.

Thank goodness you are getting the B12. I hope that you will also take at least 1000 mcg daily orally. The long range results are often proven better (lab results) with oral.

It is very common for repairs to take a long time, in fact when damage has been severe repairs can continue for years. The ups and downs and fatigue often worsen at some point as the body begins to work hard on repairs.

I also was healthy, active, happy, etc. In many cases (including mine) it is just the body's autoimmune error.

You are no longer alone. :)
http://roseannster.googlepages.com/home

rose

[rose]

By the way, what tests were done to find a cause?

rose

[Abbie323]

Thank you so much for responding. I feel honored as you seem to be the b12 guru!

As far as the tests they are doing, I am not sure of everything. I will make a point to write down all of the different items they tested for when I go to the doctor next week.

This sounds bad, but I don't feel like any of my doctors care, so I am getting my neurologist and primary care physician to each run blood work separately in hopes of getting consistent results.

I just feel like I am not putting this to rest until I feel better. As far as taking the oral B12, I have not taken any of my vitamins this month because I don't want them to mask any of the blood work, which I have been told that vitamins can do, but trust me, when I have answers, I plan to definitely swallow my fair share of pills.

So Rose, do you recommend any books to teach me more about this or remedies to feel better on a day to day basis...especially before the recovery process really begins?

How long does it take for the shots to kick in? My b12 was super low...or at least I think 78 is pretty bad.

Do you know if you can be b12 deficient without any other health issues? and do you know of any other cases in young adults like me?

I am so sorry for all of the questions. I have asked my doctors about these things but then they dismiss it as me having health anxiety because it shows I have researched on the internet....URGH!

I can't wait for the pain and dizziness and nausea and insomnia and the tingling and burning and brain fog and million other symptoms to go away. Thank you for helping to keep me sane in the meantime!

I will let you know which tests are being done as soon as I know! In the meantime, do you recommend any tests that I reallly NEED?

[dorvad]

Glad to see you made the connection to Rose

[Abbie323]

Glad to see you found some support. Aside from you, no one ever responded to me on that other board. It made me feel pretty crappy that my pleas for help were met with indifference.

Keep in touch, let me know how your progress goes!

[rose]

Thank you. ;)

You must inform yourself, because the chances are about 99% that you will not have any medical person who is within decades of being informed. The only way you will be likely to know what is going on is if you are informed and take control.

There is no question of "masking" at this point. You have had shots, and the important thing is to get lots of B12 into you ASAP. I hope you will refer to my website (it is under construction, but I just added a page on "repairs" and will add more later).

I know of absolutely no book. The neurologist who diagnosed me agreed with me that there is almost nothing out there on the repair process, and that most doctors don't know diddly about B12, even though it is written of extensively in some of the better medical textbooks.

A "78" for one is not necessarily equivalent to a "78" for another. The B12 test is not reliable. How long it takes to see progress will vary between hours and months. If you do not see progress, that does not mean that you are not making progress. A lot can go on in your body unbeknownst to you prior to seeing a result. You can maximize the likelihood of progress by taking oral methylcobalamin B12 in at least 1000 mcg daily doses.

Yes, a person can be B12 deficient, period. And that if not treated can cause an endless list of problems.

Yes, I do know of severe cases in young adults like you. Unfortunately, most doctors do not know that B12 damage in young people has been known by mainstream reseachers for decades.

Typical. You must not mention the Internet to insecure and arrogant doctors. The information I provide comes from medical textbooks, peer-reviewed medical journals, neurologists, and the benefit of communicating with hundreds of patients.

If they have not performed tests to detect antibodies to parietal cells and intrinsic factor, that would be the next step. They are not 100%, but they do uncover most cases/causes.

rose

[B12Bob]

Another possible cause is something called Small Intestine Bacterial Overlay, or SIBO. Normal bacteria from your large intestine moves into your small intestine and blocks the absorption of B12 and fat, along with fat soluble vitamins.

I was misdiagnosed for years. I have been diagnosed as having adult ADD and treated with amphetamines. One doctor said I had early Alzheimer's. Even when it was diagnosed I ran into problems with the medical community and treatment was stopped. I didn't know about the sub lingual B12 at the time.

Recently a new internist, using logic, determined that if I had been having intestinal problems for years I might have deficiencies and reintroduced the B12 shots.

I would really like to rub some old doctors noses into it, but that would be being vindictive.;) Wouldn't it?

[Abbie323]

Thank you all so much for all of this "education." I feel like I have so much to talk about with my doctor now!

Oh and Bob, you totally put the funniest image in my head. When you mentioned being vindictive, I just thought about how every single one of us has been mistreated by a doctor at some point and how we all have reason to be vindictive. Then I thought about us banning together to fight this cause.

Can you just imagine all us coming together and creating a b12 army? Half of us are too dizzy or weak to stand up on our own and the other half of us have blurry vision and can't even feel our fingers and toes.

I am sorry if this is offensive... I just thought, "Wow, we would be the WORST army ever!"

-Abbie

[B12Bob]

We could at least make a movie. Wonder if Monty Python would be willing to write it?