Why is B-12 deficiency still progressing?

[patches748]

I was on a few days ago but still need a question answered.

(have been diagnosed with FMS, migraines, possible post concussion syndrome, and PTSD)

quick history:  started complaining of burning feet in 1996; some optic head nerve atrophy noted same year.  The VA did nothing about testing me until 1999 (three years later)  I had an abnormal visual evoked test and low B-12 (294). No other test were done to see why I was deficient in B-12.   I was diagnosed with subacute combined degeneration of spinal cord (SCD) so have been getting B-12 shots since.  But one optic nerve showed atrophy in 2000 and was having blurry vision at that time.  IN eye exam in 2001, both optic nerves showed atrophy and blurriness in vision is worse. Now having problems with muscle jerking (uncooridnated in both legs and hands, more memory problems such as doing bank account correctly or tracking conversations at times, and vision is getting worse.  I have read that if disorder went on long enough that the B12 shots could slow down the progress of SCD.  Is this possible that I am still progressing and the shots only slowing it down?  If that is possible then what can I do or get the VA to do to help me?

[Mesa]

I was diagnosed with B-12 deficiency (pernicious anemia?) 6 years ago, a few months after I had recuperated from Legionnaires Disease (Pneumonia)believe to be acquired at a previous employer work site.  I experienced various symptoms: curviture of hands and arms, extreme weakness (unable to do the simplest of tasks like sweeping the floor), cravings for shunks of beef stew / meat, psychological disorders like fugue stage, memory loss, etc.  

I am uncertain if the Legionnaires could have caused this B-12 deficiency or sometype of poisoning drug.  There was a point that I had suspected an x-boyfriend John G. of drugging me without me knowing, because I always felt worse and confused after being in his company and he prooved to be an unworthy, untrustful, money hungry and status seeking shady character.  

What tests can be performed to pinpoint the cause of this B-12 deficiency.  Eventhough I have been administerting B-12 injections every 3 weeks, and I am under an endocrinologist care for inslulin dependent diabetes and microprotenuria, I frequently have mild bouts of weakness, memory loss, confusion, etc.  Not to the severity I had prior to diagnosis, but enough that is still a concern and would like to know if there is a cure or an underlying disease causing the B-12 deficiency and as yet un-discovered.  I am 43 as of this wrting.

Would like a medical researcher, genetic lab researcher, and/or physician to get in touch with me for recommendations.  Live and work in St. Petersburg, Florida and urgently need expert recommendations and options for treatment.  

[Mesa]

I was diagnosed with B-12 deficiency (pernicious anemia?) 6 years ago, a few months after I had recuperated from Legionnaires Disease (Pneumonia)believe to be acquired at a previous employer work site.  I experienced various symptoms: curviture of hands and arms, extreme weakness (unable to do the simplest of tasks like sweeping the floor), cravings for shunks of beef stew / meat, psychological disorders like fugue stage, memory loss, etc.  

I am uncertain if the Legionnaires could have caused this B-12 deficiency or sometype of poisoning drug.  There was a point that I had suspected an x-boyfriend John G. of drugging me without me knowing, because I always felt worse and confused after being in his company and he prooved to be an unworthy, untrustful, money hungry and status seeking shady character.  

What tests can be performed to pinpoint the cause of this B-12 deficiency.  Eventhough I have been administerting B-12 injections every 3 weeks, and I am under an endocrinologist care for inslulin dependent diabetes and microprotenuria, I frequently have mild bouts of weakness, memory loss, confusion, etc.  Not to the severity I had prior to diagnosis, but enough that is still a concern and would like to know if there is a cure or an underlying disease causing the B-12 deficiency and as yet un-discovered.  I am 43 as of this wrting.

Would like a medical researcher, genetic lab researcher, and/or physician to get in touch with me for recommendations.  Live and work in St. Petersburg, Florida and urgently need expert recommendations and options for treatment.  

[patches748]

I have been complaining about medical problems since 1982 when exposed to furmaldehyde so just wrote it off when starting to feel better.  Then in 1984  complained about symptoms and was sent to VA but they did not diagnose the problem as found it out myself...been exposed to natural gas for over four months.  Then in in 1986-87 complained about really bizarre symptoms and was tested for MS but nothing was found. Doctor did agree something was wrong and suggested some type of chronic fatigue syndrome problem.  Got tired of seeing doctors and hearing their attitudes that sort of gave up on it for a while.  Have many more symptoms when it gets hot and just felt I had to live with it.  Not sure when my feet started burning but do know I found in medical records I was complaining about burning feet in 1996 and since.  One doctor at VA in Portland refused to send me to a neurologist because she said my medical problems were due to my PTSD, depression and stress....which brings me to this statement:  yes, I am depressed and stressed but not because of the current situation I am in but because I feel so badly.  It is really hard when we have to deal with the medical field and seeing them not doing anything or treating us like we neurotic and have nothing better to do then come up with weird symptoms!!  I wish the best for you but my best advice is to take supplements even if you feel you are eating OK.  I understand there is a Vitamin B where you can dissolve it under your tongue and absorb it there.  Better to be safe then sorry for the simple reason you do not want to get to the point where I am and slowly getting worse over time.

[patches748]

In case you are interested I also have a site for wives of Vietnam vets and if interested please send e-mail to ***@****

There is no way to know if I was exposed to any agents/chemicals while I served in the service.  I do know that I served at El Toro, California which was an air base for Marines going to and coming from Vietnam.  Was also married to Vietnam veteran who just got back from Vietnam and suffered two miscarriages before I had my son.  The problem with some VA's, like here or Portland, is that they are not very knowledable about women veterans and problems that can happen to them, including PTSD.  Most of the VA research over the years involved mostly men (because women veterans are only five percent of veteran population).  But thanks for idea, and I compensation is available.

[bcrfowler]

The past 3-4 summers I've went though a worse time.  I am claustophic, and hate air conditioning.  The last two years we had air conditioning in (central), and of course when the weather is 90 degrees the air was on.  This past year I thought I survived the air conditioning, but right after I stopped sleeping, had the burning feet, etc.  So I blamed the aniexty from the air.  (Crazy I know).  But I really believe the aniexty makes it worse, and my search has led me to B12.  I wish someone could tell if its true.  I've had so many odd things going on with my body since I was a kid.  I was sure it was just me, but all along I probably had this to some degree.  Also, I had gone to the doctor for a cholestrol check (high trigy) and changed my diet to foods that didn't include B12.  I found if I did eat a hamburger I seemed to sleep better.

[FizzyMs]

Patches: My husband is a VietNam Vet. and has experienced several neurological problems.  Have you had an Agent Orange Screening?  The VA seems to be acknowledging several medical conditions due to that now, and I compensation is available.
Good luck-

[patches748]

thank you very much for answering my questions.  I did speak with my counselor/physician assistant here at the VA and he ordered the blood tests that you recommended. Plus he has followed my case for the past three years and was my primary care for two years.  but still cannot understand why no one wants to talk to him about my case.  I did have another EMG test done in September but the doctor rudely cut the test short once he found out I did not have a copy of my records (he could have read the coy himself) and after he found out I had PTSD and depression. I trusted the consulting neurologist in Wyoming because he went the extra mile and ordered MRI's of brain and spine in 1999n and at that time I did not show any lesions so he felt I did not have MS.   but my symptoms keep getting worse though the progress is slow, thank goodness...but still scary.  It is hard to advocate for yourself when you have depression and PTSD.  Thanks again for taking the time and will try to start advocating for myself tomorrow.

[graham]

One thing the postings on the question show is that there is a great deal of misunderstanding and variety of views on what "safe levels" of b12 are. Patches, I wish it were true that in Europe they believed safe levels of b12 were above 500pg/ml,in fact we are even worse over here. I have had a b12 level which droped from 289pg/ml in July 98, 197pg/ml in Dec 98 and 192 & 189  pg/ml last year and still I cant get any doctor here to think it is a problem because I passed a Schilling test ( measures absorbtion of crystaline b12). I have constant painful tingling and tightness in my legs and lots of other symptoms like fatigue and vision problems but it is being written off a chronic fatigue. It seems like a lucky dip with the medical profession'if you are lucky to get someone who is uptodate and aware of current studies. Best of luck.

[bcrfowler]

I have A neg. as well.  I've searched so much in the past 6 months I don't know if I read it on this forum or where.  B12 deficiencies are common in scandivian and I think European race.  I have had a hard time sleeping the past few years (in the summer) and other symptoms which by Sept. led me to the doctor.  He seemed to think if he gave me a sleeping pill I would be okay, even though I told him I thought I had a B12 problem.  This year I went to my Gyn. and she LISTENED to me.  Did the test, but sent me back to the first doctor to be treated.  I wonder if one shot a month for 4 months is correct.  The first month I was dragging, I just received my second shot, and actually feel more awake.  My symptoms are fatigue, muscle twitches, hair loss, ridged nails, burning feet.  Nice to hear from others.

[patches748]

It is very difficult to find a good doctor who will listen at the VA......I had numerous problems which I complained about since as early as 1996 concerning things like burning feet, falling, blurry vision etc. It is a shame that we can be dismissed as not being credible when we have been diagnosed with a mental disorder..in fact at the Portland Va I was told they would not do a neurological exam because my problems were due to PTSD, whatever that was suppose to mean....but that is what happened in my case (and sure many others). I personally cannot afford to go to a private clinic since I am disabled (VA compensation) and they do not take kindly to us going to someone other than them. I feel I am in the same position here (now) as I was at the Portland VA...that most are going to just treat me as a mental case. The last doctor who did a recent EMG test here did not complete the test once he found out I had PTSD plus he was mad because I did not have a copy of the previous test (which is in my records and he just did not want to read through them). i did see an excellent neurologist at a Wyoming VA who diagnosed me with subacute combined degeneration of the spinal cord once he found my low B12 level, an abnormal visual evoked test, and the EMG studies he did showed a moderate to severe sensory/motor, axonal neuropathy. ihave been on B12 shots since then but they tend to forget to keep scheduling my B12 shots and after I have gone four weeks or more I start having more problems. They cannot explain to me why sometimes I have an EMG tests and results show mild problems and other times they show more dramatic results. I do not drink nor have I ever drank much, plus never gotten into drugs. When they cannot come up with some answer it must be because I am a "mental case"!!! Sorry, but not to happy with doctors treating me a certain way. Mental disorders usually do not have much to do with medical problems and I do have proof that I now have atrophy in both optic nerves (which I did not have before 2001), vision is blurry worse, having muscle jerks during daytime, etc. Sorry, but just had to post this as know I am not the only one who suffers from being treated like a mental case. Thanks

[bcrfowler]

I also suffer from the tingling in arms and legs, and the past 3 weeks before my 2nd shot my legs ached all the time.  After receiving the shot the next day my legs no longer ached.  I always thought the tingling was normal as they have been that way a long time.

[patches748]

Itis true as I have also read that B12 deficiency are more common in Scandinaivan races.....I am half Norwegian.  I know virtually nothing about my Dad's side of the family but do know my Grandmother died before she was 45 years old. though do not know for sure what she died of.    At times I have trouble sleeping also but there is also times where it seems I am sleeping half my life away.

Does anyone else seem more affected by heat, getting too warm, or summer weather?  

It amazes me that so many doctors (I think it happens more with women then men) treat us like we are neurotic and spend all our time dwelling on our problems/symptoms.

I should have specified that not all European countries have a much higher level then the US.....I am also quite sure it depends on the doctor we are seeing.  I know I had some doctors who questioned the Consulting Neurologist in Wyoming as to whether or not I should be treated with B12 as my lever was only down to 294.  It seems to me that the test called shillings is not always an indicator of B12 deficiency...the problem is if we are not treated for such a deficiency then we can suffer neurolgical damage.  I cannot tell you when I first started having the problems in my legs for sure but did start complaining about burning feet (which is typical of neuropathy) 3 years before the VA did anything.  One of my problems is that like to put the problems on fibromyalgia and know the difference.  I really do believe I should have moved back to Wyoming because the neurologist listended to me and believed me..he was excellent.

It is nice to know we are not alone.   I am not sure we can do this but  if anyone wants to write me they can at:  ***@****

[patches748]

thanks ever so much for that braintalk site and will go there today.  Sure do appreciate it.

[CCF-Neuro-M.D.-JT]

I read our recent communication a few days ago and at that time commented on a few tests that could be done including repeat B12 and methylmalonic acid. Another would be homocysteine level - all simple blood tests that should be looked at to see how your body is responding to the shots. The biggest indicator of how well you are going to do with treatment is how long you had the disease/symptoms prior to starting the shots. 3 years is a long time. Unfortunately, there is a small percentage of patients that will not improve with treatment, only stop getting worse. SO it's possible that you may fall into this category.

Also commmented on the possibility of other diseases and consideration of an MRI to look at your spinal cord to make sure nothing is being missed. This is important especially because your symptoms are getting worse even on the B12 shots, so if it's not B12 deficiency causing the problems then you need the correct treatment ASAP. See prior note for details.

Finally, I have seen many patients like you who have been diagnosed with some kind of psychiatric disease but have a legitimate medical/neurological problem. I see how frustrating it can be for them when the problems get swept under the rug because they're automatically attributed to the psyche disease. Be persistent. Find a doctor at the VA who will listen to you and help you get the care you need. GOod luck.

[Concerned lady]

There is another interesting and helpful neurological website called http://www.braintalk.org that has a PN (Peripheral Neuropathy) forum on it.

There are many knowledgable and caring folks who post messages on the PN forum, and many posts are specifically about VITAMIN B 12 DEFICIENCIES, the causes, the symptoms, and what to do to correct it.

Check it out! I think you'll be VERY glad you did. Look for messages by "Rose", especially!

Sincerely, Concerned lady

http://cantbreathesuspectvcd.com
***@****

[patches748]

That is intersting about Type A blood because I have A negative blood.....where did you learn that information?  I have found through my own reserch on the Internet that damage can start long before we show any low levels of B12.  In Europe the levels are 500-1300 where in United States is is 200-900...so why the difference?  Places in Europe have found that low B12 can cause damage long before the US thinks.  Also there are a number of tests that should be run that could show why B12 level is low. Two things I have had are Heliocobactor pylori infection (quite common actually) and those who have taken ulcer medications over a long period of time.....I have been taking them on and off since 1989 and all the time since about 1994.

When researchers at the Veterans Administration Hospital in Oklahoma used modified criteria for B12 deficiency (elevations in homocysteine and methylmalonic acid, plus serum B12 up to 300 pg/mL -- the norm is usually 200), they uncovered twice as many people with B12 deficiency than would have been detected by serum values alone. Interestingly, some of the patients did not respond to supplemental vitamin B12. It was discovered that they were also deficient in folate, and until folate was replaced, their homocysteine remained elevated. Vitamin B12 and folate work synergistically in the chemical reactions that recycle homocysteine back to methionine in the methylation cycle. Initially, SCD causes weakness and paresthesias of the distal lower extremities. As the disease progresses, weakness and spasticity of the limbs develop and postural sensation is lost, resulting in unsteadiness of gait

[patches748]

It is hard to know where one disorder ends and the other starts.  have had numerous tests in the past (last being 2000) to rule out MS, and other diseases and they always come back to SCD. The only B-12 test they did was a level of B12 in the body and none of the others......is it too late to do those tests to see why I am still slowly progressing.  I am only 53 and not sure anymore what my future will be.....rather frightening. But another question is "Is the VA missing something here?"  I

[patches748]

It is hard to know where one disorder ends and the other starts.  have had numerous tests in the past (last being 2000) to rule out MS, and other diseases and they always come back to SCD. The only B-12 test they did was a level of B12 in the body and none of the others......is it too late to do those tests to see why I am still slowly progressing.  I am only 53 and not sure anymore what my future will be.....rather frightening.v But another question is "Is the VA missing something here?"  I

[bcrfowler]

I also have some of the symptoms you describe.  My B12 count was 218 which is low, but not seriously low.  My sister is lower with her B12 at 178 which is called pernicious anemia.  My guess would be the B12 isn't giving you the gait problems or memory problems.  It is my understanding that your B12 would be lower than 294 to cause these symptoms.  You said you are getting shots.  How often, and what dosage?  B12 causes alot of problems, but the doctors seem to treat differently.  Good luck to you.  Also B12 is commom in type A blood and is hereditary.