B12 deficiency is a differential for Multiple Sclerosis

[rose]

Here is a link to a journal article that explores some of the possible relationships (causal either way, or not) between the two. Even if there is no other relationship, people with MS tend to eventually show B12 deficiency. And severe B12 deficiency can damage in ways that mimic MS.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15896807&query_hl=1&itool=pubmed_docsum

Here is a link to my B12 website (under construction, so check it and check back occasionally). I learned the hard way that most doctors do not know how to rule out B12 deficiency.
http://roseannster.googlepages.com/home

Best wishes,

rose

[stillstANNding]

Thanks Rose.
You've helped many people on this board in the past:)

If anyone asks me about B12, I send them to you.
ANN

[rose]

Your second of the information is very important. :)

rose

[Wayleaf]

Hello Rose,
I was dx'ed early 95 and then seen at the Swank MS Clinic. They had an article posted from a neuro mag stating that it was estimated about 60% of MSers had lower than needed levels of B-12.

I was given I.M. shots of B-12 because the clinic folks said that while the pills or sublingual form of B-12 would help against deficiencies, the shots had the impact of giving energy. I had some big fatigue issues back then.

I have given myself I.M. shots of B-12 ever since. I do at least 3,000 ccs a week and my current neuro approves. I can be experiencing low stamina, tingles, and a few hours after the shot, my endurance is greatly improved, the fatigue diminished, the tingles routed. It is amazing.

A few MSers I know also do the shots and some report the same effects I have, but a very few feel no change. I suspect their levels of b-12 are already sufficient.

I had one doctor tell me that B-12 is not a treatment for M.S. nor a cure. Gee, no kidding! I told him no it wasn't. It is a treatment for the symptoms of M.S. and for lack of energy. It has made a major difference in my day to day. margie

[rose]

Margie,

Good for you!

People respond differently. A person can be nearly dead as a result of B12 deficiency and have no immediate obvious response. The old myth of everyone getting a surge of energy is baloney.

Best wishes,

rose

[rose]

Here's some basic information:

Medical researchers and medical journals have been warning for decades that anyone (regardless of diet) can become B-12 deficient. Occasionally it happens early in life, but it becomes more common by middle age.

If B-12 deficiency is not eliminated while the damage is minor, it is common for the spinal cord to become damaged, and even the brain may, or the patient may be misdiagnosed with Alzheimer's and die of heart failure. This may happen within a few years, or over decades, depending on the extent of malabsorption. And symptoms are often so subtle for quite a while that the problems seem sudden, even though they have been worsening for a quite a while.

Research during recent decades has shown that people who have neurologic damage as a result of B-12 malabsorption are misdiagnosed even more often than thought previously. And people who do not show signs of anemia (which most doctors think must occur in anyone B12 deficient) are even more likely to be damaged neurologically. They are being allowed to worsen unnecessarily for lack of a safe and inexpensive vitamin.

People who have neurological symptoms should be tested and/or treated immediately (not after weeks, months or years of other testing or waiting). If immediate testing is not possible, they should take at least 1000 mcg B-12 per day, while continuing to look at other possibilities. If B-12 deficiency is the cause, they will almost surely stop the damage within weeks and then their bodies will have an opportunity to begin a months-long (years in more serious cases) process of repair. The earlier deficiency is treated, the more likely is complete repair.

It is important to note that sometimes a very long time elapses before it is obvious that the B12 is doing anything. The body can do a lot of work (and even experience temporary worsened symptoms) while working to stop damage and repair.

rose
http://roseannster.googlepages.com/home

[rose]

If the B-12 test result is clearly deficient, B-12 therapy should be given immediately and follow up tests should be scheduled within a month or so. B-12 treatment should be continued, because most people who malabsorb continue to do so for life.

Please obtain copes of your B-12 and other lab results. Hearing "It's normal" or "everything is fine" from most doctors is meaningless, because they don't know how to diagnose deficiency. In addition, it is surprising how often out-of-range results, along with other clues, are ignored.

Many doctors think that a B12 serum result within "normal" range rules out deficiency----it clearly does not, especially in a patient with neurological symptoms.
Many doctors think that ruling out anemia eliminates the possibility of B-12 deficiency--on the contrary, people low in B-12 who do not become anemic are more at risk for severe neurologic damage.

Many patients are damaged, even disabled while testing well into normal. Rare patients are deficient even when blood levels are high, because B-12 does not work in the blood; it works in the tissues. Some people can absorb B-12, but they cannot deliver it from blood to tissues.

If the B-12 result is not clearly deficient, the patient with neurologic symptoms should have follow up tests: methylmalonic acid and homocysteine. The two follow-up tests have a good, but not perfect, record for exposing deficiency. In case you are one of the few who test "normal" all round but still need B12, it is a good idea to take at least 1000 mcg B-12 per day to cover the possibility that you are in that minority. In that case, one can only hope.

If follow-up testing cannot be obtained right away, the patient should consider taking at least 1000 mcg of B-12 per day on the chance that it is needed. If deficiency is causing the damage, sufficient doses of B-12 will stop the damage and eventually allow some degree (sometimes 100%) of recovery over time. If testing is done after B12 has been taken, the results will probably be normal; that does NOT mean that the person was not deficient prior to taking the vitamin or will not become deficient again if it is stopped.

B12 is safe and inexpensive. Too little of it is very dangerous.
A more detailed description of diagnostic procedures for your doctor is available in current medical textbooks, such as Goldman: Cecil Textbook of Medicine, 21st Ed., Copyright © 2000 (or 20004) W. B. Saunders Company.

Once the damage has been stopped, it is time to look for the cause of malabsorption or failure to convert, transport or store B12 normally. Unfortunately, most doctors will not be interested in finding the reason. And worse yet for some people, many assume that if B12 deficiency did the damage, all problems will immediately disappear as soon as the B12 level is up. Good grief.

rose
http://roseannster.googlepages.com/home

[BBS1951]

A book called, Could it be B12? is very informative too.

[Cherie]

Thanks again Rose for being there to educate us. My PCP this morning looked at my labs and mentioned that my B12 was only 300 in June and , although it was within normal range, was lower than she wanted to see. She ordered it again and said if it was not higher, she was going to order supplementation.

[BBS1951]

Thanks again Rose for being there to educate us. My PCP this morning looked at my labs and mentioned that my B12 was only 300 in June and , although it was within normal range, was lower than she wanted to see. She ordered it again and said if it was not higher, she was going to order supplementation.

The research I have read suggests that 300 is actually too low. Apparently the researchers have adjusted the level up as to what is normal. The article commented that many doctors are still with the old norm and not aware that they recommend treating under 400.

I have also read that it can be 300 in your serum, but much lower in your tissue and CSF.

My B12 level is 800 and my urine MMA and Blood MMA and homocysteine were all "normal". This is after having had an abnormal MMA and B12 at time of first attack. Who knows why it got better: I sure dont know.

You might ask for a urine MMA (Methylmonic acid) as they say its the gold standard for testing for pernicious anemia (especially in elderly and folks with GI issues).

[rose]

Did you take any B12 after the MMA was found to be high?

It normalizes quite quickly with treatment, and it can stay normal for a very long time even as B12 is going down in the tissues.

A small percentage have normal MMA and Hcy even without treatment when B12 deficient. One or the other of those tests will catch a lot of people, but not all.

Goldman: Cecil Textbook of Medicine, 22nd ed., W. B. Saunders Company,

Chapter 175, page 1054

None of these abnormalities are specific for cobalamin deficiency , and any of them may be present alone or in any combination and may vary greatly from patient to patient. None of the abnormalities are always seen in cobalamin deficiency, and the absence of any one or a combination of them does not exclude cobalamin deficiency. The neuropsychiatric abnormalities may occur early or late in the course of cobalamin deficiency and [B]with or without any of the hematologic or other abnormalities . . . How the deficiency of a single substance, such as cobalamin, can produce a clinical picture with such wide variations in severity and dissociation of various hematologic [blood] and neuropsychiatric abnormalities is unknown.

(emphasis and [ ] added by rose)

This same textbook, which is exceptionally up to date, has suggested for years that people testing 350 or below OR having symptoms should be treated with B 12.

rose

[BBS1951]

Hi Rose: I took B12 injections for about 5 months and was then told to stop. That was 7 years ago. Since then, I periodically measure my serum B12 and it has always been in the 800s.

In 2005 I read the book, and therefore got my urine MMA, serum MMA, homocysteine, folate and serum B12 levels measured. All tests were well within normal limits and teh B12 was still in the 800s.

I do not supplements other than a daily multivitamin.

Its possible that my first serum MMA seven years ago was lab error, I suppose.

[BBS1951]

So, are you saying that lab tests can all look very healthy (such as mine) and yet there can still be a deficiency??

[jcc]

Yes, it's possible. I have a couple references I can offer~ (thanks to rose for most of these ;) ). I think the take home message when it comes to B12 is the risk-benefit ratio favors treatment in questionable cases.

From: Laboratory Diagnosis of Vitamin B12 and Folate Deficiency (http://archinte.ama-assn.org/cgi/content/abstract/159/12/1289)
A Guide for the Primary Care Physician
Christopher F. Snow, MD
"As discussed above, patients with Cbl deficiency may have overt neurologic disease in the absence of hematologic findings. Patients with neurologic symptoms and signs and a normal complete blood cell count
require a modified diagnostic approach because of several considerations. First, folate deficiency is an unlikely cause of neurologic disease. Second, the neurologic disease of Cbl deficiency may be irreversible if treatment is withheld or delayed; because Cbl therapy is non-toxic, the risk-benefit ratio favors treatment in questionable cases. "

From: AAFP on Vitamin B12 Deficiency (http://www.aafp.org/afp/20030301/979.html)
"Diagnosis of vitamin B12 deficiency is typically based on measurement of serum vitamin B12 levels; however, about 50 percent of patients with subclinical disease have normal B12 levels."


From: The Neurological Manifestations of Gastrointestinal Disease by Mark Skeen, MD.
Neurologic Clinics
Volume 20 € Number 1 € February 2002

"Neurologic manifestations of cobalamin deficiency are now frequently recognized in the absence of anemia or other significant hematologic manifestations.[51] [61] [88] [151] Cobalamin levels were previously considered 100% sensitive in detecting deficiency. Numerous recent reports demonstrate symptomatic cobalamin deficiency in the presence of normal or borderline cobalamin levels.[89] [106] [151] Subacute combined degeneration has also been reported in a patient with a high serum vitamin B12 level and an abnormal plasma vitamin B12 -binding protein.[130] Serum methylmalonic acid and homocysteine levels rise as a marker of tissue deficiency of cobalamin and decline in response to therapy.[81] [89] [106]"

"The most common manifestations are paresthesias, ataxia, memory loss, and extremity weakness.[88] Cerebral symptoms are reported frequently and on occasion they are the only manifestation.[88] Subacute combined degeneration of the spinal cord occurs, with degeneration of dorsal columns and corticospinal tracts. "

From:
Disorders of cobalamin (Vitamin B12) metabolism:Emerging concepts in pathophysiology, diagnosis and treatment (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16814909&query_hl=3&itool=pubmed_docsum) Lawrence R. Solomon, 2006
"Since cobalamin, methylmalonic acid and homocysteine levels fluctuate and neither predict nor preclude responses to cobalamin, cobalamin therapy is suggested for symptomatic patients regardless of the results of these diagnostic tests."




Last but not least (and if anyone is more interested in what else this last one says...just send me a pm... rose and I have full text on all of these, I think. I know I do.)

Multiple Sclerosis (MS) and vitamin B12 deficiency share common inflammatory and neurodegenerative pathophysiological characteristics. Due to similarities in the clinical presentations and MRI findings, the differential diagnosis between vitamin B12 deficiency and MS may be difficult. Additionally, low or decreased levels of vitamin B12 have been demonstrated in MS patients. Moreover, recent studies suggest that vitamin B12, in addition to its known role as a co-factor in myelin formation, has important immunomodulatory and neurotrophic effects. These observations raise the questions of possible causal relationship between the two disorders, and suggest further studies of the need to close monitoring of vitamin B12 levels as well as the potential requirement for supplementation of vitamin B12 alone or in combination with the immunotherapies for MS patients.
Vitamin B12, demyelination, remyelination and repair in multiple sclerosis. (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15896807&query_hl=1) PMID: 15896807 May 2005


Cara

[Cry Tears]

Several years ago....2 to be exact...I was near death.
I was so fatigued I couldn't even sit in front of my computer.
My dear husband got a laptop for me so I could entertain myself while he worked in the next room.
I was unable to even do my own personal grooming and had someone come in several hours a day to help me when my husband was too busy with his work.
I spent the entire summer laying in bed only getting up to use the toilet, and when I did I didnt even have the energy to flush it!
I'd crawl back into bed, hubby would come in to fluff my pillows, give me fluids and try and meet my basic needs.
I had Peripheral Neuropathy from head to toe. My lips burned as if they were sunburned.
When I did walk my balance was so off I walked "drunk" hanging onto anything I could to keep from falling.
I did use a rolla-walker when I had medical appointments..thats if and when I kept them.
My husband drove me to them and I always went to them wearing my PJ's hair unbrushed, teeth unbrushed as well....I was that weak and fatigued!

I saw numerous Neurologist, gastro docs and even spent over $5,000+ out of pocket for a very saught after naturopath/chiropractor doctor who did every test possible, from fecal testing that cost $750 just to mention a few hokey pokey testing....She gave me accupuncture, massage, aroma therapy....(Aroma therapy??? A fart did more... than smelling daisys I was about to be pushing up!)
From Late October thru mid April I "drug" myself the 40 mile round trip twice a week to see this quack doctor who did nothing more than drain my wallet!

She promised I'd start feeling better soon once my body was rid of the intestinal "worms and parisites"that infested my colon. What is odd...all the colonoscopies I've had, and having Crohns disease I've had many...each time the pictures show a very clean pink colon.

I took the home brewed tinctures, formulas, Liver cleansers. I had numerous body adjustments....and anything you can think of to rack up charges!
Nothing she did helped and I only continued getting worse.

I was so confused, depressed and brainfogged. I was beginging to wonder if I was "cracking up", after all, the other tests doctors had order proved nothing was wrong other than my known illnesses such as the years (20+) of irritable bowel later diagnosed as Crohns, Fibromyalgia and now Periperal Neuropathy. T
hese diseases are bad enough, but nothing like I was feeling.



By early spring I was too fatigued to drive and my health really began to decline. I told my husband that I felt I wasn't going to live that much longer.
My spine began to hurt as well...I couldn't put my chin to my chest without it feeling as if I was being shocked.
It couldn't be much worse.

I was ready to give up. No one had any answeres nor did any of the medications offer any releif.
I even considered ending my life. I couldn't even cry! Why go one like this?
No one gave a rip about me...and I knew they thought it was all in my head, except those who'd known me during my 2+ years of an anemia nightmare when I suffered from an intestinal AVM (anuerism like mass) and bowel resections due to Crohns.

When I got the lap top I'd try and fumble through web sites that addressed Peripheral Neuropathy. A nerve conduction test and EMG proved I had a moderate sock glove pattern although my intestinal area and body was not tested....I'd had enough poking and zapping, what did I have to prove!

I wanted to know why I had this on top of all my other list of growing problems. I could hardly comprehend what I'd read, but I kept trudging through.
2 years ago, back in early September I found this web sight, Braintalk.org and made my first contact with Rose. She suggested I use Methylcobablim sublingual B12 by Jarrow. Dear hubby made the first purchase on Sept 3.
By Sept 10 my life began to take a dramatic turn. Wow!
My B12 level had been checked earlier that spring...it was 232...was told within normal range:eek: This was said/done by Oregon Health Science Neurology department under a very errogant resident. Stupid idiot!

I have nothing positive to say about ALL the specialist I saw desperaly seeking help. They failed me miserably. Shame on them.
Didn't they even think about my missing 3 feet of small instestines and having Crohns disease be a tiny clue that perhaps I may need some B12?
When ever I think about how I suffered, it angers me....I don't need this!

It's not been an easy road back. But I found out what was wrong by doing my own research along with the help of other knowledgable people here on BT. I can't run any marathons....but I probably could walk a few!:p

If you are having some of the symptoms listed for B12 deficiency...please do yourself a favor and take the advice here that's given freely.

And don't stop taking it thinking you are all better....and don't stop taking it thinking it's not helping. You never know!
It may take weeks, perhaps months for your body to start healing.

And while your body is making repairs you may feel worse. But keep in mind....you will get better some day if B12 deficeincy was part of your problem. It can't hurt you even if you take a boat load!
But make sure you get the proper kind. You don't need to get the painful and expensive injections....all you need is the sublingual Methyl B12.

Educate yourself as much as you can regarding this very important vitamin and share this information with anyone who'll listen.
Perhaps you may save someone from a lot of suffering.
I sure wish someone had told me before I became so ill.

You want to hear a real shocking aspect to all this?
I would ask each and every single doctor I saw if this could be related to a vitamin and or mineral deficiency due to my having intestinal surgery and over a 2 year bout with severe anemia, lowest hemaglobin being 5.1 hgb! Thats near dead! One doc told me when I went to the ER that I was having a panic attack and REFUSED to do a simple blood test. I passed out driving my car with grandkids in tow....a different doctor took a blood sample where they discovered I had some sort of either massive bleeding or Leuekemia! It took nearly 3 years to find the AVM.....was found only by accident.
Each time I'd ask about a deficiency of some kind, they were adamant I was not! How scary is this?
I do hope anyone reading this finds an answer.
I know I finally did!

Blessings to all, Cheryl

[BBS1951]

But Can excess B12 supplements be harmful?

[rose]

The danger is in having too little.

Some of the better "normal" ranges have no upper limit, because there "too much" is not harmful.

rose

[theresej]

Hi

I am new and found my way here looking for information on just this subject. I bumping this thread up as I am right in the midst of trying to determine how much of my symptoms are from a functional B12 deficiency.

To give some background.

I was diagnosed with a stroke in June of 06, but it was a strange one. MRI's showed patches that look like MS lesions, and that was mentioned as a possiblity by my first neuro and the head of cardiology at a major heart hospital. But the diagnosis was stroke.

The only smoking gun as far as cause goes was my homocysteine was elevated - 13.5. Both my neuro and cardiologist were quite concerned and my blood was thick. He looked for a special type of hole in the heart that hides until conditions are right to open, but has found nothing.

We did genetic testing on the metabolic pathway utilizing B12/folic acid as co-enzymes for homocysteine metabolism, that was negative.

Fast forward to today, about a year and a half after the "event". I have had a multitude of symptoms that go along with MS. That doesn't mean I have MS, but they fit. I saw another neuro today for further evaluaton. MRI of the brain from last week showed absolutely nothing.

Neuro says I did not have stroke. There is no evidence of a stroke on my current MRI.. He doesn't know what to make of my first MRI last year. He is saying I don't have MS (no lesions) but has ordered MRI of neck and spine.

Now, my B12 blood level was first taken about 6 weeks post event summer 06. It was just over 600. Both the homocysteine and B12 were after supplementing for 6 weeks with multivitamins. Who knows what they were before that.

Last spring, I was introduced to an energy drink with lots of B12 (almost 5,000% daily requirement), I drank 1-2 a day and it made a difference. Labs drawn a few weeks later showed my homocysteine had come down some (12.x) and my B12 had risen to around 750.

A few weeks ago, I came across some information indicating that ridges on the finger nails and loss of moons can indicate a B12 deficiency. The recommendation was to try a special form of B12 I refer to as methylB12 - methylcobalamin, sublingually in mega doses - thousands of micro grams a day.

I have ridges and have lost some moons, so I started on this form of B12 immediately,taking 3,000 mcg twice a day subligually.

For homocysteine to convert to methionine, it needs a methyl donar . . so apparently methylB12 is the form needed in this process.

A week later my homocysteine was checked again and it had dropped about 3 full points to 9.x!

I have continued this regime for the last few weeks. I notice cognitive improvements in concentration, thinking, memory, mood etc. I am noticing gradually increasing energy, and I am not being deblitated by stressful events as I was all last year (sensory stressors - visual/auditory in chaotic environments).

So apparently I have a functional B12 deficiency, and since my blood levels are normal, it is not an absorption problem, but seems to be a converson problem from cyanocobalamin to methylcobalamin.

But why no one knows . . and I doubt they will look.

Methylcobalamin is the neurologically active form of B12, involved in myelination and maintaining the health of the nervous system.

By taking it sublingually, and in this form, I bypass an potential absorption issues and coversion issues.

My B12 was tested at the same time as my last homocysteine and it was >2000.


Now, my question.

I know B12 can mimic MS. Can it mimic relapsing remitting MS?

In other words, during a deficiency such as I described above, can the symptoms get worse, then better, then worse again?

Can stressful situations cause psuedo flares in a B12 deficiency like with MS?

I am trying to determine if all my symptoms can be explained by this alone.

My neuro says no, that symptoms of a B12 deficiency doesn't wax and wane like my symptoms do. But then again, how well informed is he on this issue?

I would love som feedback.

[Moonwolf]

"Pernicious" anemia runs in my family, so mine was dx'd early on. Turns out I had folic deficiency also. The B12 and folate help with the fatigue, but because of the MS it never goes entirely away.

It's weird how the symptoms overlap. Every neuro should test for B12 deficiency. No one needs to suffer the effects of pernicious anemia any more.

[theresej]

I agree Moonwolf.

I have no anemia though. so I think this made it hard for the doctors to believe the B12 was in any way involved. I had to figure it out for myself. Then we proved it by testing my homocysteine a week after starting the supplementation and saw results.

Also, the labe values the US uses are "off" compared to other countires. Our low is 200. Japan's is 550 and other countries' are similar to Japan. From what I understand, there is a move to increase the low normal in the US also.

[gonnamakeit]

rose,

Could a B12 deficiency cause weak legs and poor balance?

gmi

[BBS1951]

rose,

Could a B12 deficiency cause weak legs and poor balance?

gmi


Yes. ...........

[reachdolphin]

I am a family physician and otherwise healthy 30 year old. 3 months back, I started noticing slurring of my speech. I had slurring which was intermittent and dysarthria ( difficulty articulating words). Dysarthria was intermittent too. Gradually I had weakness in my extremity ( right lower ext). I had a Ct of my brain which was negative. Within a week, I consulted a neurologist, who ordered only an MRI which was completely normal. He made a diagnosis of post viral syndrome in me. He assured me that my symptoms would go away eventually and told me since the MRI was negtive, it ruled out most differentials. My slurring got slightly better over one week, but I developed jaw weakness, cheek muscle weakness, intermittent hoarseness over the next week. I also developed jerking movements and forced contractions of my left biceps. This used to be worse when I used to drive my car with the arm rested on the door. Also my tounge used to hurt me a lot and my mouth would always feel dry. I also lost 10lbs (with eating more than usual), became depressed and anxious. Being a physician, you tend to assume the worst in youself or your family members and I was convinced that I was developing ALS which was in the inital stages. When I contacted my neurologist, he still did not want to change his diagnosis and told me not to "imagine too mcuh" or " read too much" about my symptoms. I suffered nearly for a month before I decided to go to an university setting to investigate my symptoms. At no time did I have symptoms such as tingling or numbness. MY Blood picture was completely normal with no anemia. At the university center, the neurologist was more sympathetic, did tell me that my picture did not fit with any condition that she had seen. She did order extensive work up, which included emg to rule out als, repeat MRI, eeg to rule out temporal lobe dysfunction/Seizure related conditions, extensive blood work such as hiv, syphillis titers, esr, etc etc and B12 levels. Everything was stone cold normal except for b12 levels. It was 134. I asked the second neurologist why she ordered the b12 levels, even though my symptoms were totally different from what you would expect and she told me it was because for any unexplained neuropsychiatric symptoms, Vitamin B12 levels are routine. Both my neurological exams were normal, except for brisk reflexes on the second exam. I started myself on B12 injections and the result was dramatic, 80% of my symptoms disappeared over 2 months. Now 3 moths later I have started getting a few symptoms back, but most probably would need more frequent b12 shots I guess. Anyways, the one month I suffered, more than the symptoms, I used to feel really bad that no one took me seriously ( all my fellow collegues, my family). Everyone, and even myself had doubts that I was becoming a hypochondriac. For everyone a normal MRI and a neurologist's verdict was better than my own symptoms. If I had given up hope and continued to suffer I might have gone to develop the most dreaded complication of B12 deficency : subacute combined degeneration of spinal cord which can be permanent neurological damage. What an experience for me. Atleast one thing, I take my own office patients very seriously and do not hesitate to refer anyone out if I have any question in my mind about their diagnosis. Being a Physician when I suffered so much for an easily curable condition, my heart goes out to others.

[rose]

I'm so glad your condition did not progress more before being caught by what is an exceptional physician. Yes, B12 serum (at the very least) should be routine, but it sure isn't even ordered by most doctors when clearly indicated.

Very happy that you confirm the point that the "classic" symptoms are often not present. I also am one of the large number who did not have numbness or tingling, or sore tongue.

Chances are your body is just getting down to working on the more difficult repairs. Many have what I have come to call a "honeymoon period" early in their treatment, which as in my case led to my believing that within weeks or a few months more I would be dancing on tables. The truth was that the easy repairs had been made and the more difficult ones would often be accompanied by great fatigue and sometimes become much more symptomatic before improving greatly if not eventually entirely.

rose

[reachdolphin]

Rose, thank you for being a pillar of support for all other users of this forum. Yes, eventhough some symptoms are back for me, I am not worried as they are nowhere close to what I had experienced 3 months back. Amazing to think that a very ancient disease like B12 deficency where the cure was found more than a hundred years before the actual cause was identified is still causing havoc in people's lives in this modern era of medicine. I guess the reasons for that is multifold. I am in the process of educating all my fellow primary care physicans about nutritional deficencies and how easy it is to correct them. :rolleyes:

[MS Bites]

Thank you...... physicians are not well versed in nutritional/vitamin deficiencies!

[rose]

And while you're at it, I hope you will shine the professional light on some of the decades out of date reference materials, found in many prestigious publications both in print and on the Web.

Gratefully!

rose

[virbej]

Hello,
I went to my doctor in November because I have been experiencing debilitating fatique, muscle wekness, numbness in my hands and feet, loss of memory, calling things by the wrong names, etc.

They checked my b-12 level and it came back at 180. They were very nonchalant about that number and suggested that I get a b12 shot once a month. I went back and they adjusted it to twice a month.

I am literally so tired now that I am not functioning at my job or at home. I have now seen a neurologist who has put me on Cerefolin and I just went for an MRI to rule out MS, but I don't have the results yet.

My question is, am I getting even near the amount of b12 that I need? It seems like from these posts I should be getting injections daily. Are my doctors mistreating my illness?:confused:

[MargaritaChic]

While the information in this thread is extremely valuable, be careful when trying to dx yourself.

I had been diagnosed with MS. Then saw similar threads on this board and went to the doctor and requested I be tested for a B12 deficiency. My B12 level was 54.

I was started on B12 injections. The benefits were a Godsend to me at that time. The Neuro told me he believed I had MS and B12 deficency. I did not think so. I went to another neuro that agreed with me. That is what I wanted to hear.

I stopped all MS Meds and went on with my life. Did my B12 injections monthly.

Unfortunately, 5 years later I again have a dx of MS (still taking my B12 injections). My MRI is much worse than it was 5 years ago... there is no longer any question whether I have MS.

It is possible to have MS AND B12 deficiency.

Explore all of the possibilities. But do not think that having low B12 levels exempts you from other illnesses.

[Chelliej28]

Hello,
I recently had a blood test done that indicated that I was borderline B12 deficient, but I am not a vegetarian, and eat a somewhat regular diet. I have tremors, memory loss, a hard time concentrating and articulating sentences and often get my words crossed when speaking. I also have tingling in my toes and hands and more recently have joint pain in my arms and legs, even when doing simple tasks. I seem to be taking tylenol almost everynight now because of the pain, even though I don't even like taking it for a headache. The doctor recommended that I begin taking prenatal vitamins because I am also anemic. Do you think that it is a good idea to get tested for MS considering these symptoms, or is this simply a result of the B12 deficiency? Someone please help. My boyfriend thinks I am a hypochondriac.

[MS Bites]

what were your numbers for being b12 deficient?

[BBS1951]

Hello,
I recently had a blood test done that indicated that I was borderline B12 deficient, but I am not a vegetarian, and eat a somewhat regular diet. I have tremors, memory loss, a hard time concentrating and articulating sentences and often get my words crossed when speaking. I also have tingling in my toes and hands and more recently have joint pain in my arms and legs, even when doing simple tasks. I seem to be taking tylenol almost everynight now because of the pain, even though I don't even like taking it for a headache. The doctor recommended that I begin taking prenatal vitamins because I am also anemic. Do you think that it is a good idea to get tested for MS considering these symptoms, or is this simply a result of the B12 deficiency? Someone please help. My boyfriend thinks I am a hypochondriac.

There is a type of B12 problem called Pernicious Anemia. In P.A. the intestine is not able to absorb B12 from food or from oral B12 pills because of a lack of "intrinsic factor" in the gut. That is why injections are necessary. Go back to the doctor and ask for a more complete workup for Pernicious Anemia. It is a terribly undiagnosed problem by doctors and can lead to devastating consequences over time.

[newlyb12def]

Vitamin B12 and/or vitamin D deficiency are commonly seem in MS patients.
When paresthesias became persistent for me, my PCP wrote a referral to a neuro and did blood work first- my B12 level came back at 138. Hence the handle: newlyb12def. My first contact with this site was through the vit/min def board.

I was treated for a yr. plus on B12 injections (maintaining levels > 600), but my symptoms remained/got worse. They never tested me for WHY I was B12 deficient- just provided with replacement therapy.

Chicken or egg? I have no idea.

There sure are a lot of theories and over-lapping conditions, but they haven't figured it all out yet.

All I know is fixing the B12 problem hasn't stopped my decline.

Kay

[karilann]

I was told one time that chocolate breaks down the B chain in our bodies, but that yogurt builds it back up.

My mother had scleroderma (another immune disease) and was grossly low in B12 also. She had shots every two weeks. Low B12 can cause a lot of problems!!