My first post! MS and vitamin B12 deficiency

[powwowwow]

Hi everybody --
My wife has just been diagnosed with CIS today. She has four small demyelination lesions on the brain. One thing that jumped out on her blood test is that her B12 numbers are below the low-normal level.

Our neuro is recommending that we start copaxone or one of the beta interferons. My question is, how likely is it that her lesions are caused by the B12 deficiency without any underlying MS? Would it be a better idea for us to first correct her B12 levels, and start the drugs only if/when new lesions appear? It would be a shame for her to start taking the drugs for the rest of her life, without ever really knowing whether they are necessary. Maybe she just needs to top up her B12, and then she won't have any new lesions?

for what it's worth, she experienced optic neuritis in one eye along with tingling and numbness in the legs, girdle area, and hands, plus a couple of vertigo episodes.

[powwowwow]

Specifically, her B12 level is 157, whereas the reference range is 200-1100 pg/mL.

[jimmylegs]

b12 deficiency is a major differential dx when trying to assess if someone has ms. i had b12 deficiency on my record when i was diagnosed but the docs paid no attention. computer glitch was partially to blame on that one :S

did your wife have a spinal mri too, and was it clear? 'classic' b12 deficiency syndrome involves cervical and thoracic spinal lesions. i had these at dx, but my docs told me that my additional brain lesions and oligoclonal banding etc in CSF were more in line with ms, so they ignored the deficiency back story. not cool. with what i know now, i could have argued back - but hindsight blah blah blah

iima, is your wife vegetarian or vegan? if so i would tend more to suspect insufficient dietary sources. that was my trouble. if not vegetarian/vegan, then b12 absorption could be the problem.

anyway, if your wife is b12 deficient according to the bloodwork, and has no spinal lesions, that sounds atypical. at very least, there should be some more tests done specific to assessing b12 status, such as CBC and PCA. CBC can tell you if hematological measures related to B12 are correct, and PCA tells you if an auto-immune problem is causing intrinsic factor trouble in the stomach, with associated absorption issues.

supplementing is doable regardless of the results of the PCA test and any associated absorption problems, by using biologically active forms of b12 tablets or strips that dissolve under the tongue 'sublingual', and are absorbed straight into the bloodstream.

research has shown a whole list of nutrients that are low in ms patients. i was all 'yes doctor, of course doctor, save my life, doctor' about the ms drugs at first, but before they could even send the nurse out for an appointment i had read enough to have second thoughts. my personal decision was to figure out what optimal nutrition was, get myself there, and then decide about meds later. i am still drug free, but the work i did with nutrition and testing was really effective in my case.

here is my favourite web page about vitamin b12 deficiency. i used to rely heavily on wikipedia until i learned what all the medical terms meant but it's awesome. http://neuromuscular.wustl.edu/nother/vitamin.htm#B12
by the way this line under the Causes heading: 'Antibody vs parietal cells' is the PCA test i was talking about.

welcome to the site, and if there's a silver lining to what you're going through, it's the learning curve - knowledge is power! i'll check back for any more details you care to throw in ttfn

ps. 157 pg/mL is 115 in my units (pmol/L) and yep that's pretty bad. my worst level ever was 'undetectable'. i like to be at least 500 pmol/L - based on some research i read a few years ago - which is... 677 pg/mL. i'm not often that high but it's such a non-concern for me lately, that i have not measured in a while.

[powwowwow]

thanks jimmylegs!

I'm looking through Lauren's blood test results, and I'm not finding results for vitamin D, uric acid, magnesium, or zinc. Do you think the test she got just doesn't test for those? It's frustrating.

[jimmylegs]

hiya! the only nutritional test i have seen even slightly routinely done as part of an ms dx procedure, is b12. the rest of them, i've found the patient has to learn about on their own and then ask the doc to run them. some docs are receptive and some are not. my doc was. might have been helpful that when i asked, i came armed with an armload of research abstracts to validate my request.
i think it's a really great idea to get the important nutrients tested so you can see which, if any, need work. can you clarify why the b12 might be down? b/c if it's from low meat consumption, you probably should look at serum ferritin as well. do you think the doc will be receptive? i hope so for your sake, fingers crossed

[powwowwow]

she eats plenty of meat -- that can't explain the low B12 level. She doesn't have the enlarged blood cells that usually indicate pernicious anemia.

[jimmylegs]

hmm, okay check out this list of possible causes (starting and the end of the second paragraph after the following 'bookmark' url) and see if anything looks like a possible link:

http://labtestsonline.org/understanding ... /test#what

do you have a bunch of other hematological parameter results? like Hb, Hcy, MMA etc?

a little more info

Current hematological findings in cobalamin deficiency. A study of 201 consecutive patients with documented cobalamin deficiency
http://onlinelibrary.wiley.com/doi/10.1 ... 909.d01t01
"Hematological abnormalities were reported in at least two-third of the patients: anemia (37%), leukopenia (13.9%), thrombopenia (9.9%), macrocytosis (54%) and hypegmented neutrophils (32%). The mean hemoglobin level was 10.3 ± 0.4 g/dl and the mean erythrocyte cell volume 98.9 ± 25.6 fl."

anyway i'd be interested to hear if you have any comments on the possible list of causes from the labtestsonline site. let me know!

[FLJhawk]

I don't think a B-12 deficiency will cause brain lesions.

It is personal decision about starting drugs. The sooner you start the sooner it can start "protecting" you but, too, studies seem to show people still end up pretty much where they would have been in later life had they not done the drugs.

But, if she is still fairly young and has not been having increasingly worse symtoms, it might be a reasonable decision to forstall the drugs and give diet a try. It might help.

Also, you can look into LDN. It seems to be helping a lot of people, but there are few real studies. At least it is safe and is cheap. Maybe try that (if you doc agrees) and wait for the next MS drug that is expected to come out later this year and which is safer and more effective.

The difficult thing is that with MS is you can never really know what the best thing to do is. It progresses differently in every one of us and the results of studies and what people claim worked or didn't work for them may have limited bearing on how it will work with your wife. Some people swear one thing worked for them but they may have had the same result had they done nothing - no way to know.

Make a decision that you and she are comfortable with and don't ever second guess it!

[bartman]

Powwowwow,
Has your wife looked into Lyme Disease? Has she been tested? Are you familiar with the controversy surrounding Lyme and how it is the biggest in medical history? I suggest you look into Lyme Disease and it's coinfections Bartonella and Babesia. These infections can and do cause lesions. Since it is nearly impossible to accurately test for these infections you need to know that if you have the infection/s and you treat with immunosuppressive ms medicines you will get worse, not better. The best way to treat is the combination of Copaxone and Minocycline for which there are several studies out that indicate the combo to be more effective than just Copaxone alone. In addition, the Minocycline would help with Lyme and Bartonella. You really need to study the Lyme Disease Controvery and educate yourself, so that you dont make the same mistake my cousin did who was misdiagnosed with ms for 13 years and almost died! Minocycline has helped him tremendously. Learn what a herxheimer reaction is also and learn about the coinfections. Many, many people are misdiagnosed with ms when they really have Lyme and coinfections....I hear about new cases every single day! Don't let her suppress her immune system, and it takes a long time to to improve. I hope you take this seriously and do the research.

[jimmylegs]

my docs said my brain lesions weren't consistent with b12 deficiency. whether or not they were correct, the science begs to differ. i had multiple outright deficiencies including b12, but i haven't seen a brain mri since i corrected them, so i really can't say for sure what caused mine! regardless, some info fyi

Retardation of myelination due to dietary vitamin B12 deficiency: cranial MRI findings
http://www.springerlink.com/content/yhb90tm8jqv9510t/

MRI of spinal cord and brain lesions in subacute combined degeneration
http://www.springerlink.com/content/87ytnfa9cnm0f099/
"We present the initial and follow-up MRI appearances in a patient with subacute combined degeneration of the spinal cord, brain stem and cerebellum, due to vitamin B12 deficiency"

CEREBRAL MANIFESTATIONS OF VITAMIN-B12 DEFHCIENCY
http://www.ncbi.nlm.nih.gov/pmc/article ... 5-0020.pdf
"The brain lesions which form part of the neurological syndrome of vitamin-B12 deficiency appear first to have been described by Preobrajensky in 1902."

[Leonard]

the low vit B12 is the result of an unbalanced gut flora.
a healthy gut flora produces B12.
http://www.mold-survivor.com/leaky_gut_syndrome.html


the unhealthy gut flora is the cause of many diseases including our MS.
see http://www.thisisms.com/forum/general-d ... 8-300.html

[powwowwow]

jimmylegs,
thanks for that link to all the causes of B12 deficiency. Nothing really jumps out. We eat well, not vegetarian, and she's not on any medications (except for birth control). She hasn't had any stomach discomfort but I suppose that there could be a problem with gut microbiology unknown to us. We are brewers and we drink a lot of beer, including a lot of yeast. I'm not sure if that could be related.

bartman,
She tested negative for Lyme, but we are aware that the test isn't always reliable.

[jimmylegs]

heya, pow, no worries

if you guys drink lots of beer and your lady's on the pill, you guys might want to look closely at zinc status. alcohol definitely depletes zinc. oral contraceptives have been shown in research to reduce zinc levels too (although not necessarily 'significantly'). alcohol depletes b12 also.

if you want to talk gut flora, here's something else - amongst a whole bunch of other necessary jobs it has to do, zinc is an important factor in prevenitng unwanted overgrowth of the various microorganisms that typically reside in an overall healthy gut.

for more reading, you might be interested in the 'healthy gut' discussion, in the 'natural approach' forum:
http://www.thisisms.com/forum/natural-a ... 18577.html