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Vitamin B12 Deficiency AnemiaFont SizeA A A Symptoms
If your vitamin B12 deficiency anemia is mild, you may not have symptoms or you may not notice them. Some people may think they are just the result of growing older. Symptoms develop slowly over years, as the amount of vitamin B12 absorbed by the body decreases and the vitamin B12 stored in your body is used up.

As the anemia becomes worse, you may have:2, 4

A pale appearance.
A sore, red tongue or bleeding gums.
Loss of taste and appetite with weight loss.
Diarrhea or constipation.
A rapid heartbeat or chest pain.
Shortness of breath upon exertion.
Low levels of vitamin B12 cause damage to the brain and nerve cells. The symptoms this causes may be the first ones you notice. They can include:4

Numbness or tingling in the fingers and toes.
Poor balance and coordination.
Difficulty thinking and concentrating.
Impaired judgment and poor control of impulses.
A decreased ability to sense vibration.
Ringing in the ears (tinnitus).
Dementia, a decline in mental abilities that is severe enough to interfere with daily life.
Absolutely! Good stuff, klc. My doctor did this in my most recent blood work. I get the feeling it's not always a given that they'll do this so it's definitely a good thing to put on the list to inquire about. :)
ITs a very good point to bring up, for those who were not aware of this; however, almost all neurologists DO test for B-12 deficiency in their initial exam. Its one of the most common "mimics" of MS.
Thank you for putting as much info as you did here, I think alot of people can benefit from knowing there are other things besides MS which show these symtoms.
[QUOTE=MSNik;3023721]ITs a very good point to bring up, for those who were not aware of this; however, almost all neurologists DO test for B-12 deficiency in their initial exam. Its one of the most common "mimics" of MS.
Thank you for putting as much info as you did here, I think alot of people can benefit from knowing there are other things besides MS which show these symtoms.

Thanks, I'm a big time researcher... I always have been and since I'm just getting started on the diagnosis journey and I have not seen a neuro yet, I didn't know this.... I thought it could be helpful...
Klc, youre going to read some other posts where you might not thank me. Although I think it is AWESOME that you are reseaching so much about symtoms, etc. Im not so sure you are doing yourself any good in the long run. Youll see my answers, and I hope youll understand. I say these things because I am concerned for you and am worried about you. NOT For any other reason.
Just dont over-do it. Not much of what you read is factual online...this board is probably the very best place to get info from !! The people here, myself included, really have "been there" "done that". I care...know that.
If I can just chime in to share an experience--I was diagnosed with fibro and cfs this week and am not diagnosed with MS--although I have tons of symptoms my MRI was great and I may not even have MS. I hang out on this board because asking questions (and getting good answers) and hearing what others are saying helps me a) feel like I'm not alone with these crazy symptoms and b) understand why it takes so long to get diagnosed.
HOWEVER...a long time ago, before I discovered these boards, I was researching all over the web. Some sites are very reputable, but others are full of outdated, misguided or just plain BAD info. And my anxiety levels were going through the roof at that time. There are so many things that have overlapping symptoms. I had to stop reading everything, not because I was starting to think I had everything, but because the overload of info was making my symptoms worse, as crazy as that sounds!
I hope you get to see a good neuro soon. It's always good to keep searching for the root of your symptoms through all kinds of different doctors and specialists. It may be a long and VERY frustrating road, but you will get much better info from them and it's a lot easier than trying to sort out the useful from the heaps of useless info out there on the Internet.
And ALWAYS ask questions on this board--everyone here is great and has TONS of knowledge and experiences they are willing to share. Best of luck to you!
Desperate 1- THANK YOU THANK YOU THANK YOU. I am so happy that you understood where I was going with my post. Im actually afraid that KLC wont understand. She is so obviously in pain and in need of support, which is what I want to give her; but I felt the need to express what over researching can do. YOU nailed it on the head. Thanks. I dont want anyone to ever think that I am criticizing the use of researching. I think when you have something , you should know everything there is to understand what it is you are dealing with. But, I still cant help but agree, too many symptoms and too much possibly wrong info, is only going to frustrate you and like you said, quite possibly aggravate your symtoms more.
Thanks for saying it in a way that I couldnt. My MS is going nuts today! :dizzy:
Re: the B-12 test, I'm not really so sure that it's a given to test it if the MRI shows lesions. One things I'm really learning (and I know I'm not alone in this from speaking to others) is that when I go see my MS specialist, he is only interested in talking to me about MS, not anything else that might be going on. In my last visit, when he didn't even want to LOOK at my thigh (weird "livedo" and hot/cold sensations) I assumed it was because he dismissed it as MS. A talk with my internist told me that this was not the case at all -- he didn't want to look at it because he felt it WASN'T MS related. Courtesy of a referral from my internist, I just made an appointment with a regular neuro.

Point is, none of us can assume that everything going on is because of MS, even though it would be easy to with this mysterious condition! :rolleyes:
This is usually a curve, isn't it? I was totally on the same tear as klc was. Think that's only natural when no one's telling you anything and you're desperate for answers! Anyway, think a lot of us have been there but we usually do come back with our feet touching the ground, often with the help of people like these good folks on the boards.

The quest for a dx is definitely a journey, in more ways than one. :)
I know all docs are different, but B12 was one of the first things they tested for me. (Mine was 451 in a range of 200 to 1100, which I thought was low considering the amount of B12 I take through supplements and get through food, but, again, I don't know anything about it). You'd like to think they would test it for anyone exhibiting neurological symptoms, but you never know.
Nikki, sorry you're having a bad day--hope you feel better real soon!
Exactly my point. You never DO know so it's best to not assume. I've no doubt these doctors all mean well but I think that it's not unusual for specialists to be a little myopic. I think in my case it was because it was an MS specialist and not a regular neuro. The end of last week was pretty bad for me because I felt I was without answers again, even with an MS dx! Seeing that there WERE things in my c-spine report that he didn't mention to me also made me uneasy. Anyway, all doctors are different and I'm just now getting to understand better how to talk to my specialist when I go in for my next visit -- and WHAT we're going to be talking about. :)
Thanks Desperate 1. The one thing which is making me feel better, and I'm almost sorry to have to say it, is I must have had one wonderful Neuro to begin with. All of these tests, from B12 to full physicials, to sending my blood/ serum to Ca for LYme checks...[B]it was all done[/B], and I didnt have to request any of it. I never went thru the amount of trial and error that Im hearing about here. Im really sorry for anyone who is.
I wish that I could send you all to my doctor. He left nothing unturned, and he is one of the highly recongized MS SPecialists in the country. I read articles about him all the time. IM just surprised that these tests, which were ordered without request and as pretty routine, arent as routine as I thought.
Yep, you're lucky. Remember in my case, I bypassed the neuro route completely. Thanks to ON, it was straight to the MS specialist from the neuro-ophthalmologist -- so I guess now I'm heading backwards to get some other answers, LOL! I think it's more a consequence of being so busy -- MS specialists seem to be few and far between so they're very busy and focus on just MS. Not an excuse but maybe a reason (even though I'm not going to say it's a good one!). I'm not sure if this is true but someone else in the same boat told me that there are only 4 MS specialist in NYC! Anyway, if I didn't have such a great internist who's made it clear he wants to know EVERYTHING that's going on, I think I'd still be a little lost.
B-12 deficiency is very common in people that have had weight loss surgery. Specifically the gastric bypass. The intestines are not able to absorb the B-12 you need.

So if you have had WLS or know someone that has had it, it is routine for the rest of your life to be tested for B-12 deficiency and to take B-12 shots if needed.

I have had WLS and I do take B-12 shots. I was told before my WLS that B-12 deficiency was a common side effect, but one I would need to take seriously for all the reasons mentioned in the original post.
HA! I got all the way through these replies without seeing anyone mention the "official" name for the condition: Pernicious Anemia.

I found this when I was searching for a dx. B-12 is essential to producing myelin. A severe deficiency can result in "invisible" lesions (more systemic demyelination rather than in "pockets"), not visible on MRI. I also think I recall the anemia/MS parallel is specific to numbness issues, parasthesia in particular (peripheral numbness).

It can be caused by malabsorbtion (I think that's the word) - hence the risk associated with gastric bypass -, alcoholism and a couple of other things I can't remember.

It is apparently almost impossible to get a lot of B-12 into your system using supplements, so B-12 shots are usually given when a deficiency is found. The one food I recall reading has lots of B-12 is red meat. And for people with MS, red meat is a whole 'nuther thread.

B-12 level was in the very first set of blood tests my neuro ordered (I was actually hopeful that would be my problem - my only major sx was L'Hermitte's - but it was fine...) She also put me on B-Complex. I do take that along with a mega-multi-vitamin and calcium+D (as a woman "MY AGE" should always take calcium). While a supplement probably can't correct pernicious anemia, it can't hurt to give the old myelin a little help!

Shees - I forgot to mention that I did a LOT of research while I was on the roller coaster to a dx. I did work hard to resist the urge to obsess. But in the end, I got through it. And I had much more satisfying conversations with my neuro as a result. I didn't TELL her about all the research, but I understood what she would say and was able to (innocently) ask some other questions!
I have been told repeatedly by my hematologist and my gastric doctor that taking B-12 supplements by mouth is a waste of time and money. It can't be absorbed easily through the stomach and intestines and therefore if you aren't getting enough through diet, then shots are essential to keep levels up and that B-12 pills or sublingual drops are not effective.

I've been tested and my B-12 levels are fine. But I do give myself B-12 shots monthly.

B-6 defiency also can cause problems. At least I think it's B-6. Both doctors have also told me that maintaining ALL the B vitamins is important as lack of B vitamins can cause a lot of problems.

Malabsorption issues abound in gastric patients which is why we are told to take good nutrional supplements because of the small amount of food, we aren't getting it from the food and we need the supplements and a good deal of those pass through unabsorbed due to malabsorption syndrome, so its important to make sure you take good supplements.

I am supposed to get routine blood work for all supplement levels to make sure that I am not low on iron, B-12, potassium, etc. Fortunately I just had all that done and my levels are good.
Hmmm, I find this interesting as I am not knowledgable at all about B12 or 6, however when the Dr told me last week about the lesions on my brain MRI and that I needed to see the Neurologist he also told me that my labs showed that I was very high in vitamin B and not to take any supplements. I am thinking about doing something while I am in this long attack while waiting for my, I am considering taking Vit D..however, he said not to take anything until the Neuro instructs me. While this discussion is about Vit B deficiency I'm curious why my body has so much B since I don't nor have I ever taken supplements. Any ideas?
[QUOTE=klc23mom;3023760]Thanks, I'm a big time researcher... I always have been and since I'm just getting started on the diagnosis journey and I have not seen a neuro yet, I didn't know this.... I thought it could be helpful...[/QUOTE]

I have Pernicious Anemia. Please read on for my sojourn to a dx...
I have been on disability for over a year due to balance, extreme fatigue, strabismus, and general visual pain/problems. My symptoms started out as text book Meniere's Disease, having a focus on the inner ear. After a couple months, my nerve related symptoms, and extreme difficulties with cognitive, memory, dexterity, numbness, pain in extremities, twitching (toes, fingers, and facial), dropping things and general spasms throughout my body shifted my focus to neurological disorders. Neither the first and second neurologist I saw did a test for B12 deficiencies initially. The second neuro sent me immediately for Neuro-psychological testing that showed significant deficits in memory, IQ, focus, short-term memory, dexterity. The Neuro-Psychologist stated that he felt that he was confident this was a neurological disorder (central cortex I believe he said), and reported that back to the ordering Neuro for further work-ups. He ordered MRI with and without contrast of the brain orbit, the evoked response, and both came back "negative". Only after telling my neuro about my constant diarrhea, did he order the B12 blood test. [B]I do in fact have Pernicious Anemia. [/B]
My problem is, that due to my multitude of complaints, diabetes, and multiple back surgeries, doctors are inundated by the symptoms, and are immediately skeptical as a result. Due to the massive amount of pain and nerve related symptoms, and Peripheral Neuropathy assumptions, I passed a kidney stone (2 mm in size, which is fairly large) while all the while the associated pain was being lumped in with all my other pains as symptomatic of the neuropathy, or possibly the patient is just psychosomatic. Now with multiple reports showing marked cognitive impairment, loss of dexterity, Pernicious Anemia, and a left eye that wanders out so much that I cannot see to drive (even if I could remember where I am going, and how to get there), my neurologist is still clearly skeptical. :mad:
What exactly must a person do to get Doctors beyond this sort of psychological biased view of patients with such a long list of symptoms, and prove to them that your not a psych case?
I have asked repeatedly for a spinal tap, since the plaque, that would be indicative of MS is not present. I have read that the cell destruction from the myelin destruction would be evident in the fluid. The neuro says if you insist on wanting that, you'll need to get another doctor to do it. I was floored by such an adamant and unqualified stand. I therefore seem to have the opposite problem of others who need a non-MS Neuro, as mine really seems to want this to be strictly a Pernicious Anemia problem, and doesn't want to look further until a 6 month period of taking 1000 mcg doses of B12, to see it's effect. I feel that the symptoms of MS and PA are too close to ignore the possibility that both are possible, and therefore worthy of a greater scrutiny, in parallel.

I am so frustrated, and scared, as I sometimes wake up in my easy chair, with both arms laying flat on the arms of the chair, and both are completely asleep, ie. completely numb. This has happened on numerous occassions.

I apologize in advance for this lengthy post. It's my first. I am comforted just by your collective presence here. My research, when I can see and think is the only thing that comforts me that [I]someone (ME)[/I]is researching my problem, as it's clear my Dr.s thus far are in a wait and see mode.:rolleyes:
ezee--I understand what you are going through, I am in a similar position as many others here. I have also been to many doctors and know how different they can be.

I would not discount the PA at ALL! I have been anemic for 7 mo's and the symptom list was just ((((((crazy))))))!!!! But when it did resolve those symptoms definitely went away. Now, I have other things that have not gone away and are being looked into. But the faces of anemia are not pretty. I don't think that it is too much to give your doctor a chance of 6mo's for the B-12 to kick in. It takes a long time to fix this even 6 mo's might not be enough time but will be a good start. Our symptoms really are a process of elimination, trial and error. Although it's hard to hear, sometimes wait and see is better! I'm a Frequent Flyer on the anemia boards, I'm thinking that if you haven't already, click over there and read/post, you'll find others with good information. You can also use the search box above for PA on these boards. Hope this helps. FLFLOWERGIRL :)
Thanks FLowerGirl.

I will take a spin over there, and take a look for PA. As for my Neuro's wait and see approach. That was not the only reason I was feeling he is not really being aggressive. I didn't state it, but the really aggravating thing to me is that he is out of touch with how little possibility the B12 tablets have, since the disorder is one of poor or no absorption by the secondary (intestinal) means.

I can't believe that I had to discover this on such boards, and not from the learned individuals that we have all entrusted our fates to. From my reading over the last 3 days, I have determined that it is every bit common knowledge that injections are essential to checking the progression of the cognizant deficits which are already significant in my case. He never articulated this to me:nono: , or my wife (my surrogate memory, my advocate, my life).

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