Discussions By Condition: Medical Errors

B12 Deficiency - misdiagonsed many times

Posted In: Medical Errors 7 Replies
  • Posted By: b12_UnDiagnosed
  • December 3, 2009
  • 11:37 AM

Hi All,

I am posting my story here so that people who are suffering with similar problems can give B12 serum test a shot and see if they are deficient. remember B12 deficiency if diagnosed early can be treated very easily. Once you live with it for a longer period of time (years) you may have some permanent irreversible damage which may be hard to treat.

I suffered for 10 long years to find out that I am B12 deficient.

Here is my story I will cut it short to come to the point. I am 35 year old now.
As a child I used to have frequent colds, developing in Bronchial Asthma and sometimes pneumonia.
I was even diagnosed with allergic Rhinitis and was told that I am allergic to dust, pollens etc.

In my teenage, I used to have lot of upset stomach, Gas etc which used to get treated as and when symptoms were seen.

The real thing started happening once I joined my Job.

1) 1999 - Started feeling tightness under the left ribcage. Initially thought its a problem with my heart and did all kind of tests which all came negative. Good Gave me some relief.

2) Till 2001 lived with this dull pain ( which was variably spread through out the day). Always thought its some kind of nerve pain near the ribcage. Due to not getting proper diagnosis after going to different doctors over a time, Started feeling stressed out( also Anxiety) and stated thinking that I will have to live with this pain through out my life.

3) Due to all this stress symptoms started getting Gastric problems,Constipation, Irregular stools etc.

4) 2002, was referred to Gastro and he told that I have GERD which lead to heartburn.He tried all medications including H pylori treatment which worked for a while but never gave full relief and heartburn kept coming back.

6) 2003-2005 - I started living with this pain which was always there 24 hrs. It started happening that when I was not having this heartburn( nerve pain) I used to feel unusual.

7) 2005 - out of depression and to get proper diagnosis, Underwent Endoscopy, contrast CT scan of full abdomen. Everything else was ruled out and they gave a good name to these symptoms, IBS.

8) Despite on medication of IBS ( PPI, Normaxin etc)I knew something was wrong as I can see my condition worsening. But every time I went to a doctor, they told its in your mind and I will have to live with this for whole my life.

9)After some more time, when my condition started worsening, and when I visited any doctor or Gastro, they started giving me depression tablets.
9) 2006 - Started getting blurred vision ( once in a while) and physical balancing issues. Went to doctors and they told its because of Depression & Anxiety or probably the side effect of the IBS medication which I take.

10) 2008 - Symptoms started increasing with chronic fatigue and what ever I do, there was always a CD running in the back of mind that something was wrong with me and I will not be able to survive. I know this is what is called Depression and people who have gone though this will understand. There was lack of concentration, mood swings, loss of appetite, vision problems and I could see my health going bad to worse each day.

11) Early 2009 - Got a spinning sensation and could not stand and was rushed to hospital. Initially they diagnosed with Vertigo. Gave medication for 2 weeks. But Thankfully also asked me to go for other tests ( Brain MRI, MRA, CBC, B12 Serum, Lipid profile etc)

All tests were okay( actually perfect) except my B12 which came to 166. Was admitted to hospital for a day, Given 3 units of MVI( multivitamin infusion) with 3 nervijen plus ( 1500mcg of Methylb12 + 0.75mg of folic acid, Nicotnamide - 45mg) administered over a period of 12 hours.

I Was prescribed nervijen capsule( 750mcg Methylb12) for next 3 months ( once in a day) and come back for checkup.

After taking the IV methylB12, next 1 month was great. Almost all symptoms were gone. but starting 2nd month, energy level started decreasing again, fatigue started coming back, heartburn again started showing up. I somehow spent 3 months with the prescribed medication and checked my B12 serum again ( it came 213). I went to doctor with this report and he refereed me to Gastro for why my body is not assimilating B12. Gastro asked be for some GI blood tests for Intrinsic Factors and other GI factors which all came as negative. so a PA was ruled out.

He gave me following medication for next 1 year and told that I will be fine.

Inj Neurobian forte ( combination of 1000mcg CynoB12 + B complex) for 7 days.once in a week for next 4 weeks and then once in a month for next 1 year.

It was all well till I was taking injection every week, but then when it came to once in a month, I saw symptoms returning back in 2nd week. I was upset and thought probably something wrong with my body and would never heal back again.

Now, after reading on WD forum, I have switched to Methylb12 ( Nervijen plus 1500mcg MethylB12 + folic + nicotamide) once in a week. Not sure how long I may have to take these painful injections and I still does not feel 100 % fit ( I think I am hoping too much after I have got some hope from people on WD forum).

I still take Clonozapam(.25mg) for anxiety sometimes. Though Yoga ( specially breathing exercises) does give me some relief from Anxiety & Depression but I can't doing these exercises all the day.

As I work in IT ( telecom Software Industry) and have need a lot of concentration to sit in front of my Laptop all day. All this is making my life difficult to work in this kind of stressed environment where there is always pressure to deliver. Now with these Symptoms. I have lost a lot of self confidence and try being alone, Don't communicate much with people around me.

Anyway After knowing the WD forum, I found that active B12 subliguals can help me between B12 shots. I tried finding sublinguals in India ( Bangalore) but have not succeeded yet. For the time being I have ordered it from iherb which will be delivered in Singapore and my BIL who is scheduled to come to India in Mid December will bring it.

Hoping for the best. God bless all!


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7 Replies:

  • Hi Arya,I have very similar symptoms....I live in Bangalore too.... But everyone i spoke to says B12 symptoms should not last long once you start injections. My level was 103 when tested in sept. & it reached 900 by dec. But my symptoms are still there. I am anxious, have some spasms on my head, mild chest pain, numbness in fingers which comes & goes. I am on monthly injections currently. Has going back to weekly injections helped you?Regrads,Avani, Bangalore
    Anonymous 42,789 Replies
    • January 30, 2010
    • 10:53 AM
    • 0
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  • Hi Arya,I have very similar symptoms....I live in Bangalore too.... But everyone i spoke to says B12 symptoms should not last long once you start injections. My level was 103 when tested in sept. & it reached 900 by dec. But my symptoms are still there. I am anxious, have some spasms on my head, mild chest pain, numbness in fingers which comes & goes. I am on monthly injections currently. Has going back to weekly injections helped you?Regrads,Avani, BangaloreHi Avani,Understading B12 deficiency is complex, I must say, not many medical practicenors knows about latest development. They still treat people with old techniques ( giving Cynocobalbin Inj). The biggest misconception is that once you reach more than the permissible limits, they think you are fine.To first understand the problem visit this thread which has best information about active B12 and its effects on body.http://forums.wrongdiagnosis.com/showthread.php?t=62327read post 7,8& 9 from Kevinmillhill and then go back and read the whole thread from Freddd. Try to read it multiple times to understand fully( I know B12 deficiency causes brain fog and its difficult to concentrate and understand).Since I have been researching on it for almost 6-8 months, I have some knowledge, you can call me or mail me if you want. my email id is bkarya(at)gmail.com. I would like to know what kind of Injection you are taking and what Symtoms have gone and what still exists.ThanksArya
    b12_UnDiagnosed 110 Replies
    • January 31, 2010
    • 03:36 AM
    • 0
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  • Dear Avani,I am also having same symptoms & i have not got any relief after taking so many supplement & injections can i have your email id i want to discuss with you? Thanks Nitin
    Anonymous 42,789 Replies Flag this Response
  • Dear Avani,I am also having same symptoms & i have not got any relief after taking so many supplement & injections can i have your email id i want to discuss with you? Thanks NitinHi Nitin,I sent you a reply on your gmail Id.As I told you, B12 deficiency is curable, and its better to be well informed as not Doctor's may not take you seriously. May give you some injections and once your level reaches the permissible limit, they may think that you are fine. They will not even think any ***n about the psychosis you have. Sorry to say this but You will keep going to doctors all the time and will get into the trap of Medical Business Mafia and keep spending money all your life but still not feel fully fit. To cut the long story short, Give me a call so that I can explain how to feeling better.As one point of time, my mental condition was so bad that I started thinking of giving up my Job, but I had family to look after. I have always been a high performer, that too dipped drastically in the past year. Now I am 80% better after almost 8 months of supplementation.To explain you in short, let me say.1) Try to find the answer why you became b12 deficient. 2) Try finding if you have any other vitamin or mineral deficiency, because lack of B12 affects your digestive systems and makes it difficult for your body to absorb other vital nutrients.3)B12 affects your Metabolism leading your body to hormonal imbalance which affect your body & Mind.4) B12 is needed for Cells&Neurons replication, Lack of that means you don't have enough cells regeneration and body starts giving up to any kind of pressure.( Physical or mental).Now one important thing to know that when you start B12, You may feel that your symptoms are going bad to worse, That's natural because your body is waking up after a long time, Cells (RBC) will start to replicate in next 2-3 months . This is called start up - effect of B12 suplemenation and will fade away in some time. After that body will just heal.If you know, human cells have something called mitochondria & cytoplasm. To activate your cells there is a active form of B12 ( called AdenosylB12) which is needed to activate cell mitochondria and another active form of B12 ( methylB12) goes into cell's cytoplasm which is needed for cell cytoplasm. There are other Vitamins & minerals which are also needed when the new cells are formed, so a deficient person should take a good proper diet & food Supplements.I would also recommend switching from Cynocobalmin (CynoB12) to active forms of B12 like mecobalmin( Methylb12) for injections. CynoB12 have to be converted by body to Adb12 & methylB12 which is used by body.To cut the story short, Keep the hope. Now that you know that you are deficient, Things will improve, It won't go worse :)Keep faith in GOD :)Happy healing.ThanksBhishma
    b12_UnDiagnosed 110 Replies Flag this Response
  • Hi friends.Updating this thread again after a long time.Things have been fine after I switched to active B12 and also isolating wheat ( gluten ) products from my diet.I also make sure that I keep taking Multi vitamins in between ( Though don't take it regularly).Have not taken b12 injection from last 18months.Just take B12 sub-lingual once in a month or 2 months.I am 95% fine.. I think getting that 100% is difficult since I had suffered for 10 yrs before getting my diagonsis and treatment.But Life is good and I hope it will be better again.So people who are suffering from B12 deficiency and have not got diagonsis , Pls dont loose hope. Once you start on the treatment protocol.. Things starts getting better.Read more about B12 deficiency in another thread in this forum.. now there are other groups in other places like Facebook etc.Join them and share your exp.CheersArya
    b12_UnDiagnosed 110 Replies Flag this Response
  • b12_undiagnosed- Are you gluten free now or was it just for some months? What brand of b12 sublingual do you take(is it available in India?)
    yukon04 1 Replies
    • September 14, 2012
    • 07:03 PM
    • 0
    Flag this Response
  • Hi everyone,Happy to get this thread discussing about the problem m facing, and especially people here are from India (Bangalore). and i wonder the lack of knowledge about vitamin b12 in india even now in 2016 as this thread is of many tears old. i dont see any improvement in type of treatment now and then. i an diagnosed of vitamin b12 deficiency last month and i was prescribed 1000mcg shots everyday and 4 weeks once and once in a month for 6 months. as i asked my doctor what can i eat and what not. he told me to eat everything what i eat . but after starting injections i felt so many changes in body . actually i never felt symptoms till it was diagnosed but after starting injections i started feeling symptoms likr mind fog, anxiety , heart palpitaions.

    later i started searching about b12 in google and found so many useful things and started to check what is the thing which caused me deficiency and found it is my gut. i never checked on my stools and my digestive system.
    Anonymous 1 Replies
    • September 2, 2016
    • 06:33 AM
    • 0
    Flag this Response
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