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Old 07-12-2008, 08:09 PM
either/or either/or is offline
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Default B12 deficiency verses MS...?

I have been posting throughout this community the past 4 months, relating to different conditions. I may sound like a hypochondriac to many of you, which I can be at some level, but things are happening to me and I want to figure this out desperately!

I've seen two neurologists, one twice, and an Ophthalmologist twice. All seem as though they are on the verge of laughing at me.

Can anyone read my story (I'll keep it as brief as I can) and give me their opinion? I'll next post in the MS thread, but I want to get opinions here first. Thanks for your time.

Four years ago I lost some ability to use my right arm and leg for a week. The limbs were both numb and hard to use. I dragged my leg and couldn't button my shirt. My symptoms resolved on their own and life was normal for four years.

In January of this year I became pregnant (currently 29 weeks). In March I developed a pain with eye movement in my left eye. Possible Optic Neuritis was diagnosed. I lost none of my vision or ability to distinguish colors (which is normal with Optic Neuritis) but do see flashes of light when moving my left eye from side to side now. Brain MRI without contrast came back normal- MS ruled out by my medical team.

In May I developed Occipital Neuralgia and shortly thereafter L'hermitte's sign. These are all conditions associated with MS (and with B12 deficiency)- and yet with a normal brain MRI 4 years after my first MS-like symptom, my docs won't even consider MS- they treat me like a hypochondriac as new symptoms develop.

Seems my whole pregnancy, since second trimester, I have had a numb or tingling spot. I feel like I have an ace bandage wrapped aroung my left ankle at the moment, but there's nothing there. MS is supposed to be supressed by pregnancy... but my symptoms seem constant now (for 18 weeks now anyway).

My Obgyn found through bloodwork two weeks ago that I am low/normal in vitamin B12 (result = 239). I have been taking prenatal vitamins daily that contain a varied amount of B12 ranging from 4mcgs to 25 mcgs for a year and a half now. Why would my result be so low?

I became a lacto-ovo vegetarian in 1994 and was dedicated until 2001, when I began to cheat . I have meat once or twice per month since then... still not a big fan of eating things with parents.

I was diagnosed with Colitis 21 years ago... I had two bouts with it, two months apart, 21 years ago (second bout they determined was salmonella-related). I've never seen signs of colitis again- but it was awful when it happened. Could it have destroyed my ability to absorb B12 I wonder?

My main question is- could a low-normal B12 level (even while I was taking a multi-vitamin) cause neurological problems identical to Multiple Sclerosis? I know that people with MS often have low B12 levels as well... which could be the case in my situation, but then again my MRI is normal after 4 years, which can happen with MS, but is rare. I also understand that B12 issues do not resolve on their own which doesn't explain what happned to me 4 years ago- considering I got better on my own (more indicative of MS).

I'm lost. Is there any test that can determine a B12 deficiency that is not MS-related? I'm a young (mid-30's), expecting mom. This sucks! I've been taking a B12 sublingual supplement for two weeks now... and all seems stable, but nothing is getting better just yet (but stable is good). Neurologist says with time, I will stop paying such close attention to my symptoms and life will resume as normal (I guess she was calling me a hypochondriac?). She says that she doesn't see signs of MS in me. Occipital Neuralgia is normal within the general population she says... and my L'hermitte's sign is simply 'spinal cross-talk' - huh? What happened to me four years ago was stress-related or Guillain-Barre and the possible Optic Neuritis might never be explained she says. I'd rather be crazy than have MS... but maybe this is simply a B12 deficiency (since the two conditions can mimmic one another)??? How can I know for sure?

Thanks again for your time.
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Old 07-13-2008, 01:55 AM
Proton Soup Proton Soup is offline
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i thought i might have MS at one time, too, but B12 deficiency seems a lot more likely now. i'm sure a lot of other people will tell you this, but even if you're using high-potency sublinguals, the active methylcobalamin is infinitely better.

weird eye and sinus stuff became a part of life for me after getting poison ivy in my eye, then a prolonged case of pneumonia a couple of years later(during one of my coughing fits i thought i was having a stroke when i got bright haloing on the right eye). gastric reflux probably contributed to inner ear problems on that side, too. all i know is, it was a constant dull pain for years. not something i usually felt sharply, but nearly incapacitated me. colors were a lot brighter on that side, and lots of light phobia to boot. i suppose getting the nerve injured when deficient impaired healing or something. it's not so bad now, but i do still get a sensation of weirdness or unevenness in vision sometimes. tooth pain from sensitivity or jaw clenching seems to contribute, too.

about the leg. i used to get a lot of strangeness there, too. numbness, tingling, or other oddness in my foot that makes me want to take my shoe off. now, this sort of thing can be related to impingement of the sciatic nerve, and might can be relieved with some stretching. i don't have the material right in front of me at the moment, but i think what you'd want to try out is stretching the piriformis, and maybe the glutes. i also get a bit of impingement in my median nerve that gives that carpel tunnel effect (pinky and ring finger numbness), but it's mostly just a nuisance and i'm often too lazy to do the stretching and trigger point release to help it, just depends on how much it's bothering me atm.

and yeah, i can relate. the eye doctor didn't think anything odd of my new color sensitivity in the eye, nor did the physician think the haloing from my coughing fit was out of the ordinary. i guess if things hadn't taken so many years to get better, i might have just shrugged it off, too.
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Old 07-13-2008, 10:31 AM
glenntaj glenntaj is offline
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Default B12 deficiency--

--is one of the great mimickers of multiple sclerosis. And everything you've written, save that incident four years ago (which might have been a transient myelitic attack of your central nervous system, which then remyelinated, given the "normal" MRI results), is consistent with that.

First of all, your B12 level is way too low. (A lifetime of vegeterianism may well have contributed--B12 can only be broken out of animal-based foods.)
In Europe and Japan, the bottom range of "normal" serum B12 is often around 500-550, not the 200 often used here in the US (we're well behind in that regard).

Your supplementation is also not enough. If you have problems breaking B12 out of food, those prenatal vitamins will not help. B12 is the largest organic nutritive molecule regularly used by the body, and almost anything can interfere with its absoption. Those of us who supplement do it with massive doses--starting at 1000mcg/day (1 mg) and often going higher. This is to enable the 2-4% "passive absorption" through mucous membranes that allows people to get the 8-10 mcg minimum requirement that most bodies need for functioning and to allow stores to build up. As B12 has no known toxicity level, this should be fine, although some people notice feeling "wired" on the dose (B12 was once called the "energy vitamin").

Serum B12 is also not a great indicator of cellular level usage--though low levels are obviously not a good thing, people have had symptoms even at higher levels. The homcysteine and methylomaic acid tests, while not perfect, are much better indicators of usable presence on the cellular level.

Many doctors are very behind on B12 knowledge. I suggest you search for posts on this subject here from the following very expert people:

Rose
MrsD
Paul Golding
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Glenn's Law of Seasonal Exacerbation:
Whatever it is, it'll only get worse in the summer.

Last edited by glenntaj; 07-14-2008 at 06:39 AM.
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Old 07-13-2008, 12:50 PM
heldo18 heldo18 is offline
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Hi,

I am constantly worrying bout ms. I had tingling pins and needles, headaches, extreme fatigue and just generally felt very ill a couple of years ago. My b12 levels were at 60. I take it that is very very low then? I am ok most of thetime but have started getting head aches again, some pins and needles I still get from time to time and I havebecome obsessed with every senstion I feel. I dont seem to be able to turn my left arm round as far as my right andI dont know if this is justsomething I have and its joint or bone related or if it is something nuero. I dont even know how long I have hd it but am obsessing over it just now. I had a brain and full spine scan when I was ill 2 years ago and it was all clear. I am going on a long haul holiday on wednesday andam not lookng forward to it due to fear of falling ill on holiday. Ido also seem to have anxiety problems. If anyone has any suggestions please let me know. I had nerve damage tests where they usepins etc but can other damage be caused by b12 that may cause lasting damage? I am unsure and scared. x
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Old 07-13-2008, 04:16 PM
Proton Soup Proton Soup is offline
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i used around 100~150mg of 5-HTP for anxiety taken near bed time, with sometimes another dose during the day if there was an acute attack. longer term, i think getting proper sleep helped more than anything for the anxiety, and to that end, i take 300mcg of melatonin.
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  #6  
Old 07-13-2008, 06:38 PM
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So much valuable info in such a short amount of time-- thanks to all of you!

In regards to anxiety, I take Xanax when I'm not pregnant... and it helps tremendously, even at the lowest dose (even then I only take half a pill). Heldo18- could you get a prescription from your doc?

I feel I know so much about MS but so little about B12 deficiency. So grateful for the incredible information from all of you. I currently take 1000 mcgs of sublingual B12 as cyanocobalamin. Is active methylcobalamin easy to find? Can I buy it at my health food store? I've been taking the sublinguals for 15 days and want to ask another question... do these pills cause gas? Since supplementing B12, I'm out of control!

When I had my attack 4 years ago, it was serious. I wasn't able to function normally. It was hard to turn a door knob- and it was happening to my right arm and leg- and I'm right-handed (thank goodness I healed and quickly)... but what's been happening to me over these past few months is different. My original incident affected my sensory and motor skills... and all the stuff happening to me recently is only sensory in nature-- painful and constant (constant is not indicative of early MS), but not disabling- which makes me favor the B12 low/normal dx (and I'm not sure why I've come to that conclusion). Nothing has caused damage that I couldn't live a normal life with. Mostly numbness here and there- carpel tunnel type stuff and possible sciatic-related numbness, strange cold and hot patches of skin (not to the touch)... My doc told me how to stretch to resolve sciatic nerve issues and she gave me an arm splint for carpel tunnel symptoms. I'm grateful to know others have experienced symptoms similar to mine- and sad for all of you who have gone through this as well.

I was up early this morning watching Diagnosis X and the doctor on the show was going to dx a lady with MS & he went on and on about how devastating and awful MS is. I couldn't finish my breakfast. MS is a scary dx to face... but at this point, I just want to know what's wrong rather than 'wait and see' as it seems I have been left to do. Maybe I don't have a choice!? The thought of MS initially had me on the verge of suicide- but MS isn't always as awful as it is portayed to be. There are mild cases which offers hope to many.

I would be so excited to have a B12 deficiency after facing possible MS-- but how can I know for sure that my deficiency isn't MS-related?? It's my attack four years ago that won't let me turn away from possible MS. It could coincidentally have been a single attack on my central nervous system- I was really sick the weeks prior and my docs at the time thought it could have been a virus attacking my c-spine (they blame everything unexplainable on a virus it seems)... but my current neuro says the damage would have occured in my brain. Needless to say, I retrieved my medical records and it states, 'MS/Stroke presentation.' Four years without incident is promising... and a normal MRI after all of that time offers me even more hope!

When my B12 test results came back (less than 24 hours), I saw the results online and it said 'normal.' I was sad- but not surprised... I've never been anemic in my life! The next day my nurse mid-wife called (on a Sunday no less) and said those numbers were low and demanded I begin taking the sublingual supplement (1000 mcgs every other day- but I take it every day) and she'll re-check me in 6 weeks-- I then bought my supplement and began my B12 internet research. I saw the MD/OBGYN this past week (I see both ladies during pregnancy) and she said my B12 levels were normal and didn't know why her co-worker recommended the supplement. By this time, I had done plenty of reading on B12- and knew the number was low, in spite of what she was saying.

Glenntaj: In regards to- 'Serum B12 is also not a great indicator of cellular level usage--though low levels are obviously not a good thing, people have had symptoms even at higher levels. The homcysteine and methylomaic acid tests, while not perfect, are much better indicators of usable presence on the cellular level.' -If I have this test performed, will my recent supplementation affect the results? I also read about a Schilling's test... I wonder if this test can determine the difference between a B12 deficiency due to MS or due to another cause??

I don't even think they know why people with MS sometimes have a B12 deficiency... so I think I might have to 'wait and see.' My husband is a Biochemist- and after reading about the many MS differential dx's, I would often ask him, do you think it's a B12 deficiency? He's vegetarian too- but he doesn't ever cheat like I do... He said there was no way I could be deficient... that it would take years and we consume dairy products- that is why I didn't look into this option earlier. Ha ha hubby- you were wrong!!!
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Old 07-14-2008, 06:38 AM
glenntaj glenntaj is offline
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Default It's very difficult--

--to determine just WHY someone is deficient in B12, as there are so many things that can cause difficulty breaking it out of food, from reduced stomach acid to autoimmune attack on the parietal cells of the gastric tract to interferenece from medications, or that can keep it from being absorbed.

Fortunately, flooding the system with B12 can usually at least arrest the decline caused by deficiency, and, depending on the amount of damage, it may even reverse the process. Healing is generally slow and not always complete, though, and there may be a lot weird symptoms along the way as the nervous sytem reorganizes. (This is especially true if the spinal cord has become affected--"subacute combined degeneration".)

The Schilling test is still used in some practices, but has mostly been replaced by the methylomaic acid and homocysteine tests--at least among physicians who know of them. (These are generally the physicians who also know that one can have B12 deficiency without showing signs of megablastic anemia--and Rose can tell you all about that.) It's ture, though, that heavy B12 supplementation will often cause methylomaic acid and homocysteine levels to nomalize quickly, so one cannot rely on them after supplementation begins, even if one's experienced considerable damage prior.
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Old 07-14-2008, 11:09 AM
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Thanks for the info Glenntaj. Further B12 testing is then pointless to me, as I have also read that the Schillings test is rarely offered these days (I read that this test can determine B12 absorbtion issues even after supplementation), and the other tests will not be accurate after my supplementation.

I will then wait and see. I sometimes consider getting the Lumbar Puncture (to rule out/in MS)- it was offered to me once recently- and I'm sure I could pursue it now... it just scares me (people complain of serious headaches for days- even years, and my PCP warned of possible paralysis). I'm still sort of in shock in regards to the serious outcome of not having enough B12... I think when I began vegetarianism I was warned of this- but in my youth, laughed it off. I still completely promote the vegetarian lifestyle- but would now encourage vegetarians to supplement B12- especially since it's cheap and non-toxic.
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Old 07-14-2008, 12:00 PM
Buttons2 Buttons2 is offline
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Stop fretting you have MS! I get my B12 @ Vitamin World for about $8 a bottle. It's Source Natural's Methylcobalamin 1MG. You put this under your tongue until it disolves. And take it at least 1/2 hr away from any other vits or food.

I got my info from Rose several years ago. My only B12 test came out high @ over 900.I went by symptoms,not test results. I also drove myself nuts over MS possibility (and I did have lesions on my MRI).

I have improved alot both mentally & physically. Whenever I take a time off of the B12 I go right back to depression & difficulty in walking,the pins/needles stuff,etc.

To the person with a B12 level of 60,why didn't your doc start B12 shots? I can't imagine how you function!

Get some B12,take it everyday & wait for improvement. It's not gonna harm you. For the one that started this post & is pregnant,talk to your doc!

Good luck & please read the posts by Rose

Last edited by Buttons2; 07-14-2008 at 12:02 PM. Reason: spelling error
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Old 07-14-2008, 12:04 PM
Buttons2 Buttons2 is offline
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Also,are any of you consuming aspartame products? If so please research aspartame poisoning! After nearly 10 yrs of using that crap I finally gave it up totally this past spring & I'm amazed at the difference in my life.It's hidden in over the counter drugs,some vits & even some RX drugs.....very,very bad stuff!
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