I am new to my diagnosis to B12 defieceny. I think my dr only tested it because of my fatique. I guess I am lucky she thought of it. But my dr still doesn't feel that half my symptoms are coming from it. She just told me this past week that shaky isn't a symptom... mainly just fatique. She said I should see a therapist... as soon as she said that I thought to myself, "crap, I need a new dr" I am taking the proper steps at this point and calling a hemotologist monday.

but I wanted to thank you Cindy because it's like you are in my body and my head and dealing with alsmot the same stuff. I am a mom of an 8 year old girl and I have a very demanding job that takes a lot of brain power and concentration. These symptoms are really starting to effect my life. I have been taking the b12 losingers and I got shots twice (after asking for them) and I am feeling better already, not 100% but it's noticable. I beleive I caught my earlier enough to help it faster, thank god! but I am still having days of weakness and feeling high and dizzy. My eyes are driving me crazy!

but again, thank you so much... I now know my dr telling me to see my therapist is a complete freakin crock! I'll keep you all updated with what the hemotologist says... god I hope he doesn't blow me off!

ordinarily this TSH would indicate hyperthyroid.....what other testing has been done?

hi there
my baby boy (22 months) has been treated for b12 deficiency since he was 10 months old... it is not consistantly deficient, no pattern, so we do monthly tests and injections when needed. lately he has been rolling his eyes up quite a lot. everyone seems to be mentioning how their eyes drive them crazy with b12 deficiency. what does it feel like, do your eyes ever roll up or flicker from side to side? not sure if it is a focus problem or siezure activity. wish he could tell me how he feels... reading your posts about detailed symptoms has helped me to understand more about what my beautiful baby may be experiencing. it all makes sense.
leah

Okay this is my first post and it is a reply!

I was curious as to know where I can find methylcobalamin type B12 easily?

I should mention I am Pernicious Anemic and it was caused by Ulcerative Colitis which thankfully has not bothered me for over a year now but alas this stupid irritating B12 deficiency is driving me crazy as you all know from your own experience.

I am a 41 year old male, 6ft 4 in and 240 lbs and also wondered if that would require taking more b12 than other people or not who are smaller?

Anyway a year and a half ago I got the neuro symptoms you guys all know about already. Vision problems, numb cheek, tingling, numbness in hands and feet etc etc etc.

I thought I had it under control and foolishly lowered my dose as I did not know if taking too much B12 were harmful or not so I was at 750 mcg for about 6 months and obviously it was not enough.

Anyway I know one can get permanent damage and I think I have in my left arm as that was always feeling slight sensations now and then.

Almost two weeks ago on Halloween night i really had some facial numbness going on, vibrations in both feet and hands to go along with the numbness.

Obviously this isn't fun to deal with and you guys know that already.

I cannot afford a doctor for one thing, have no insurance and have to treat this myself which really sucks.

The good news is when i upped my dose of B12 which is a sublingual form most of my symptoms went away but not all.

I still feel slight disturbances in my calves which spasm a little bit which I have read that you guys have that too when your levels are low.

I have been improving everyday at about 8,000 mcgs a day and now am at 1 and a half weeks since i got sick again so I do feel good about that.

I also take 130 mcgs of iron a day which really helped in the beginning as i was severely anemic when I first sought help.

I played ice hockey Monday night (last night) and had one of my best games in a couple of years, had fresh legs no fatigue and everything was right on.

I had gone to the emergency room on saturday night and it seemed more like I knew about as much as the doctor did about B12 deficiency. I can't blame the guy .... I mean they are just people and have to treat a wide variety of everything and they do not specialize in anything.

I was worried about MS obviously and asked him if B12 masks MS symptoms enough to feel like they (the symptoms) are almost gone. he said "I don't know". At least he was honest.

Does B12 mask MS symptoms enough to feel just about normal?

In any case he will have some lab results for me today (wednesday) with regards to my B12 levels. Since I am improving and feeling better taking 8,000 mcgs a day if that offset the accuracy of his test. In other words if he says that my B12 levels are normal would this be because I have MS or because I was taking enough B12 to start healing and it makes the b12 test look better than it really is.

I am new to this even though I have battled this for a year and a half now any input is helpful. I have been reading this thread and have already learned a lot.

I also know that every single symptom of MS is also a symptom of B12 deficiency just about.

I do know my symptoms have dramatically improved since upping my b12 dose and common sense would say that MS doesn't get better after taking b12.

I have the MS thing in the back of my mind there enough to irritate me and I am sure you gusy had the same thing happen to you.

This is why i feel comfortable talking about this here with you and have confidence in your answers.

Thank you again. My name is John by the way and I live in Maine in the USA. I am very poor and cannot see doctors, no insurance and the only thing I can do is go to the emergency room which so far has been ZERO help other than to tell me my Thyroid test was normal and I am not anemic at the moment.

This just may be the longest first post ever in here but i stumbled onto this thread Googling B12 deficiency stuff. I had to stop in and say howdee and ask some questions.

i hope you do not mind.

Is suspect that if you have a B12 test now, given the major supplementation you've been doing, it will certainly show up higher, given that you've been flooding you're system with it. In fact, it may show up out of range on the high side, which I wouldn't worry about, although it might raise eyebrows from uneducated doctors. (My last B12 level was 1864. I have to explain that I take 1000mcg methylcobalamin daily and have for years.)

I also suspect that your MMA and homocysteine levels might rapidly normalize if you're been taking that amount of B12--and yes, given your size, you might need more than most--but that doesn't mean you do not need to continue taking it. You may not need to take 8000mcg/day forever, but might need something like a 1000mcg/day maintenance dose for life, to continue to build stores and to allow the body plentiful amounts to use in making what repairs it can. Many people, our own jccglutenfree here among them (better know as the author of The Gluten File--and you might want to look at gluten sensitivity/celiac as a cause for B12 deficiency as well) who've had deficiencies repaired report an initial big jump in wellness over the first several months and then slower, but continued small improvements for years (and nerves take FOREVER to heal, if they even can).

Yes--you're discovering that B12 deficiency is one of the great mimickers of multiple sclerosis, down to the brain plaques that some B12 deficienct people develop. B12 deficiency, even without anemia, is supposed to be on the differential diagnosis list of every neurlogist investigating MS.

I'm going to give you a list of places to check out--read, read, and red more. There have been a number o fpeople who have been through this who have compiled very comprehesive databases on the subject:

Paul Golding:

http://www.paulgolding.id.au/THE_B12...rayalHome.html

Rose (who still posts here occassionally):

http://roseannster.googlepages.com/home

jccglutenfree (AKA Cara)

http://jccglutenfree.googlepages.com/b12deficiency

And the B12 thread at our peripheral neuropathy board, started by Mrs. D (it's also accessible through the Vitamin/Mineral supplement board here):

http://neurotalk.psychcentral.com/thread85103.html

First of all thank you for your reply and the links will be read completely and bookmarked for future reference.

I got off the phone today and the doctor told me my B12 levels were higher than normal which was good news to me because I expected that.

I had feared that if they were that it would mean I have MS or something but mathmatically I cannot assume that because I already know I have pernicious Anemia from the Ulcerative Colitis.

Also after only a week and a half of my upped dose my symptoms are virtually gone and continue to improve a little everyday.

Now this being said obviously I will have to keep an eye on new symptoms that should not happen since I know my dose is good at the moment.

The sad part is that if I have the diseased section of my intestine removed it would cure this almost immediately BUT obviously new problems arise from that procedure which include IV feeding only for a long time until it heals and even then another surgery for a colostomy bag would probably be the outcome pending on the severity of the intestinal damage.

So far my UC problem has been dormant and unfortunately damaged intestines NEVER heal so I always have abdominal pain and problems associated with that disease like bleeding etc.

Okay so I have some reading to do and I have found this forum immensely helpful and very comforting. I feel relaxed now after reading around in here and knowing what to expect. nerve damage takes a very long time to heal and the doctor today told that it can take years to heal ... at least he knew that much lol.

Just for fun I guess here are the symptoms i had personally with my issues.

Numbness in left cheek, blurry vision in right eye, tingling and vibrating in both hands and feet more severe in different limbs than others. The vibrating felt just like having your hand on something vibrating.

Chest pain once in a while, arthritis in my breastbone and hips as well as lower back, fatigue, sleeplessness and severe insomnia ... at one point sleeping just 2 hours in 4 days even though I was in bed for 8 hours a night.

I didn't feel right, moody, crabby, tearful for no reason, anxiety and extreme worry about everyday mundane things.

Lights ... I would see and stil do sometimes see a white circle when my eyes are closed and I move my eyes side to side or in a dark room with the the eyes open. These have gone away for the most part since the b12 supplements. I also had the slow iris closing thing in one eye yet my other one clsed normally.

I also at night would turn off the light to go to bed and when normally you can see a little bit in a dark room my right eye was pitch black like i was blind yet my left eye could see normally. This was only in very low light in a very very dark room.

NOW I am virtually symptom free and just feel some nerve damage in my left arm near my wrist joint. Originally when I was both anemic and B12 deficient I was very sick and my left arm was bothered the most so this makes sense that I still feel that now and I know I will probably for another couple of years or it may never feel good again.

I am sure there may be a symptom or two I have missed but generally the same ones you guys have had.

My symptoms started to creep in around 2002 which I know now as the Ulcerative Colitis didn't bother me enough to notice it until the end of 2007.

It amazes me how strong the human body is and yet it is so fragile.

I just hope my UC doesn't become a problem and it stays dormant but statistics say otherwise. 40% of people with it end up with a colostomy bag at some point usually later in life.

I will also find out if my B12 deficiency will change with that as well if the UC worsens.

Usually young people (20 year olds and teens) get this UC believe it or not so I am a late bloomer with this disease so hopefully I can get through life without too much trouble.

The cause is still unknown though but it is known that third world countries who are exposed to more bacteria and unsanitary conditions have LESS cases of it. UC is caused when your immune system attacks the lining in your intestines and causes inflamation.

You guys have helped me tremendously and i am very VERY grateful for the info you have provided as well as the wisdom from your having these same diseases.

Thanks!

I don't know if anyone followed my posts in this thread but I have an update.

It is just past 3 weeks of my new B12 relapse I would call it, more my ignorance about dosage of B12 than anything. I let my dose be too small for a while and it kicked my butt.

Not being able to afford a doctor has it's drawbacks like trial and error with dosage.

I was taking only 500mcg to 700 mcg and got sick again.

So I upped up to about 7,000 mcg for a couple of weeks and things really turned around and it eliminated most of the symptoms but now being 3 weeks I still have some symptoms. I am now taking 2,750 mcg daily along with my iron I need for the seperate anemia.

Most of the day I barely feel much of anything which is good.

As I type this I am getting calf spasms which are very annoying. My left wrist has had a numb spot and sensation of weirdness for a year and a half since I first noticed nuero issues. Seems like permanent damage which is okay because it doesn't bother motor skills or anything.

I have a serious couple of questions here, I have dropped my dose down to about 2,750 mcg a day and am thinking that is still more than I need in a day.

Most of my symptoms are gone now BUT residual stuff still goes on .... is this normal? When my nerves feel weird are they doing this because they are healing?

The second question I have is .... does dosing with B12 MASK MS symptoms too and not only B12 deficiency? B12 got rid of most of my symptoms and I am assuming that this would be impossible with MS. I mean I play hockey and the things that impaired me before like fatigue are gone now.

I cannot test for MS since there doesn't even seem to be an MS test but rather a process of elimination which I cannot afford to do.

I feel so alone with this sometimes and it tries to take over my life. if anyone has experieince with pernicious Anemia or B12 deficiency and can give me any answers at all I would appreciate it.

I know not everyone's symptoms are the same which makes things even harder to researsch.

Thanks in advance.

--of improvement with large dose B12, one should stay on it, possibly for life. And even megadoses are rather cheap these days, especially through Internet sites such as Iherb.com and Swanson vitamins.

Given what you've said, I think the 500mcg--750mcg doses are too low. Many prophylatically use 1000mcg/day, to ensure that the 1-2% passive absorption rate is above the USDA recommnded daily requirement. But if you've been low for a long time, and need to repiar tissue and raise liver stores, I'd go with at least 5000mcg/day dosing (and methylcobalamin if you can get it--still much less expensive than what most insurance will reimburse for periodic injections, and if you don't have insurance, it's that much more of an argument for oral supplementaion).

Doctors are finding that people with MS have very low Vit D levels.

You might have more than one thing going on with you.

Hi there.

Keep taking the B-12. I take 5000 each day, and it saved my life and I have virtually no PN Symptoms anywhere. I have arthritis but I've had it for 21 years and they told me I'd have two knee replacements and two hip replacements but so far so good. I don't eat anything that can cause inflammation. I also take Vitamin D 1000 each day, I just might increase that.

sorry to hear about your woes, but you're doing all you can. Here's hoping that someday your health insurance coverage improves sufficiently that you can get the tests you need.

Take care of yourself.

melody