cindy B12 deficiency (pernicious anemia) survivor
 

Hello all, I hope my experience with B12 deficiency can help others. I will be posting all my details soon. I just recently got my 1st computer. Wished I had one when I was sick. This kind of site is why I wanted one.

Hi there. WELCOME!!!!

And now that you have your first computer, YOU MUST POST!!!! lol

Seriously, just wanted to welcome you and say hi.

I'm a BIG believer in B-12. I have diabetic neuropathy and I take Methyl B-12 (5000) each and every morning.

It saved my life, literally.

So hope you find lots of good information (and some new friends).

Take care, Melody

Just wanted to welcome you to Neuro Talk. Hope all is well. We have many forums to explore and learn from. Below I have posted a forum on Vitamins, Nutrients, Herbs and Supplements. Hope it is helpful!

http://neurotalk.psychcentral.com/forum49.html
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hello and welcome to neuro talk ... there are lots of friendly and supportive people here ... i hope to see you posting soon
http://neurotalk.psychcentral.com/forum49.html this is the link to the vitamins, nutrients, herbs and supplement forum .... they discuss b12 problems there ....
http://neurotalk.psychcentral.com/forum35.html this is the link to our social chat room ... and again ...
http://i371.photobucket.com/albums/o...GroupFairy.gif

Hello and welcome to NeuroTalk. Great to see you have come to be with us. Just let us know if we can be of any help. We are all here to assist each other as possible.

Again welcome, looking forward to seeing you around.

Darlene:hug:

Cindy, welcome to NeuroTalk. :hug: You will find a lot of nice and caring people here. Have a look around. Aren't computers great? :D



http://i489.photobucket.com/albums/r...s/Welcome2.gif

I think your story would be helpful. Many people with mystery illnesses have either a frank vitamin deficiency or a functional deficiency (where their bodies simply cannot process/metabolize or transport the substance).

Yes, I would be interested in your experiences. I recently had a blood test and B12 was one thing that was low. Hope to hear more from you. Thanks.

cindy B12 survivor
 

I hope my experience can help someone. Please feel free to question or respond.
You are not alone. You are not crazy. If you have B12 deficiency and are just starting injections, be patient! IT TAKES TIME! I know you wanted to feel better yesterday or last year. I know you want to eat a regular meal and not suffer. I know you want to wake up and feel strong and alert. I know you want to be pain free. I know you want your eyes to work properly. I know you want to stop feeling like you want to jump out of your skin, or lash out at someone. I know you want to be able to walk without feeling vertigo or stumbling
against the wall. I know you want the depression to go away.
If your B12 level is under 300 and your doctor is not giving you injections, get another doctor! If your doctor wont check your level, get one that will!
A good level is 500 or higher. 300 or lower causes neurophyciatric symptoms! Brain symptoms! If this sounds like you call your doctor tomorrow! Again, you are not alone!
This is what happened to me:
Oct 2003 start Now I know everyone is different,so you may have some or all of these symptoms. Get ready, there are a lot of them. First off was a bloated, full feeling after dinner. Only dinner. That lasted for a while then progressed to every meal along with gastritis. It worsened slowly then added chest pain with it. I then started to get weaker and tired more. I knew this was not normal for me. I am a hard working, fit, 50 year old female. I usually run circles around my teenagers. This slowly progressed until one night in May 2004. I was getting scared about the chest pain and dizziness I was feeling. I went to the ER. I was put on heart monitors and evaluated. I went home with a script for carafate(stomach coater) and blood work. I followed up with regular doctor whose 1st response was "why so many tests?" I explained how I'd been feeling and he gave me a script for antibiotics(UTI), and an acid reducer(Prevacid). I said "what about my chest pain?" He said "The antibiotics should take care of that". WOW! I might be blonde and female, but I'm not stupid! I was back in the ER the next month (June 2004) with the same symptoms, but worse. Doctors thought chest pain was costalcondritis. Still had UTI. No recheck. This round of antibiotics worked on UTI only. Had stress test, results negative.
In March of 2005 still getting worse. Doctor ordered Upper endescope and GI. Results were excessive stomach acid, mild acid reflux and hiatal hernia (small). We did more blood work. Nothing! Still on acid reducers. Gradually other symptoms started to appear. I called doctor more often and made no headway with him. All he did was prescribe muscle relaxers and antidepressents! Ever try amitryptalene? Put me out a couple of days. Doctor usless never heard me when I said I dont want anything thats going to make me feel groggier! Only tried those meds once. Threw the rest out. The only other test Dr. Usless tried was a gallbladder scan. Negative
I was losing weight. Tried to eat something from the 4 food groups to keep strength up. This was my diet for over a year. Boiled chicken, potatoes, carrots, toast and a can of ensure. Anything that digested easily. Earlier I was eating pudding, milkshakes, icecream, soft food. Doctor usless never told me dairy was out with stomach acid problems! I also lost hunger pang feeling. That took a year to come back.
More symptoms: Weakness: all over (especially in arms, legs and hands. Arms felt like wet noodles and hands had slight tremor all the time. Walking: stumbled frequently (no I dont drink) walls are my friend and I still have that problem. If I took a walk (tried twice a day) afterwards my legs would have spasms the whole length. Palpatations under the skin, especially in calf area.
Muscle spasms: in arms and restless legs ( still have restless legs)
Eyes: Stys, not focusing correctly, light sensitive, right pupil enlarged(freaky) and I saw blue flash out of the corner of my eye. Nobody ever explained that one! Checked and no diseases
Light headed: vertigo, just not alert, felt high everyday.
Nauseated: everyday, strong odors like bus, smoke or gasoline made me worse
Cold all the time, not chills, just cold
Bladder: frequency and incontinent also UTI
Weight loss: Went from 5'6 130 lbs to 115lbs, way too skinny
Short term memory: terrible and doctors blow it off
Speaking: hard to get words out and make sense
Skin: sensative, hurt when itching self
Shock feeling: back of neck (scary) felt like cattle prod might feel
Heart: palpatations always at night in bed
Pain: in places I never felt it before. back and neck, burning, stabbing pain Doctor says, your not getting any younger you know. I say its not normal, I know my body!
Muscles: soreness..shoulders, neck and back
Depression: set in slowly..very irratable to family members. Jumpy, edgy and nervous. All totally not me. Have never been prone to depression.
I ended off work on disability. Dr. Usless did nothing more to help me. I kept calling and he finally said when are you going back to work? I said I'm not better! He gave me one week. I had to go because of disability. I lasted one week and was back in ER. They gave me some stomach concoction and another stress test (neg). Dr. Usless said I had him stumped. NO referral NO NOTHING.
OK then. I'm home, very ill, know this doc is a quack, so I need a new course of action. I feel alone, scared and frustrated. I have a job I can't do, a family and house to take care of and all of us are worried. First stop is a stomach specialist. A woman! Dr. Mary listened and tried a few meds. Some masked, but didn't take care of the problem (severe gastritis). My stomach hurt with whatever I ate. It didn't matter if I ate boiled chicken or a hot chicken wing! Same results. I researched and thought I had H-Pylori (stomach bacterial inf.) We tried prev-pac (2 antibiotics and prevacid combo) WOW it worked! Guess what? A month later it was back. Tried it again. It worked for a while and came back again. I think it just helped calm the inflamation going on in there. 3rd try of prev-pac did not work. Dr. Mary would take my chart home and ponder.(at least she was trying) I also tried rhumatologist and endacronologist. All testing neg. I have an aunt on dads side with rhum arth. I decided to try a doc here who I knew did stomach surgery, like gast. bypass. I thought he might have an idea about my problem. He ordered a gallbladder scan. Came back positive. I cried because I thought this was finally the answer. The boiled food diet I was on I was putting through the blender by then. Yuk! I entered surgery with thoughts of pizza, breyers vanilla with peach schnapps drizzled on top and lobster. Within a week of surgery I was way worse. Could not believe it. Dr. Mary suggested I get an MRI on my brain. Called new regular doctor (also a woman) Dr. Michele and she ordered one. My tests came back and showed unspecified areas. She referred me to Dr. Peter a neurologist. OK now i was really scared! Dr Michele was kind of leaning to MS. I have an aunt on dads side with MS. I tried not to freak out until I talked to Dr. Peter. I wanted to be told something. Put a name to all this! I just did not want a death sentance. I have a sweet and caring husband, and 4 kids. My youngest 14. What would happen to all of them without me? Many times I thought the worst. Please God no MS.
My appointment with Dr. Peter was long and exhausting. He tested me and we talked. He assured me that the leisions were not MS (HUGE SIGH OF RELIEF) He also told me he would not abandon me. He would figure this out! He ordered bloodwork. I cried because it was a relief to find a doc that was sincerely concerned. My second visit he ordered a lumbar puncture. I agreed. In the meantime, I'm reading a column in the paper. A doctor question and answer column. It's called Dr. Gott. Someone asked about B12. He gave a few symptoms(research only gives a few also). I showed my husband and he said to call the doc. Dr. Michele ordered it and it came back low. I started injections in 2006. I asked Dr. Peter if we could put off the lumbar puncture. He said yes, but wanted to monitor me along with the shots. This took a lot of patience. I had shots for 6 months before I felt anything! It took almost 2 years to heal along with physcial therapy to get my body going again. I was a mess!
Its a slow comeback, but it is a comeback! I still have stomach upset once in a while. My eyes will never be the same. The pain is my biggest beef. Im back to work and do too much, like the old me. I'm OK with that, and I deal with the pain by keeping busy. No meds, Do not want any. Stomach can not tolerate them anyway.
If I did not see Dr. Gotts article I'd probably be dead. I'm happy I'm alive, and pretty much well. If this is as good as I get, I can deal. I found out after the fact that my Dads Dad had pernicious anemia. Inherited?
My regular Dr. now screens all patients at their physcial for B12 because of me.
I highly recommend the book "Could it be B12" to anyone suffering with this problem. The woman who inspired it lives in my neighborhood.
A few months after starting injections, I tried sublingual B12. My level jumped right up. Try it. I still do both and feel good when my level is 600 or higher.
Again, you are not alone.
Peace, Cindy

thankyou for the welcome melody. I've now posted. This is a great site. I'm here to stay!

learning to reply
 

Hey, let me know why you had your B12 checked. Whats going on with you? Cindy B12

Nice welcome
 

thanks to FranksAngel, Darlene, azoyizes, Jaspar and tamiloo. Yes tamiloo I would like to be your friend, as soon as I figure out how. I'm still learning this computer!!!!

And--
 

--I'd like to point out two things.

Acid blockers often contribute to B12 deficiency in those who are prone to it, especially as we get older. We need intrinsic factor to break the large B12 molecule out of food, and this works only in an acidic stomach environment. We tend to secrete less of it as we get older, and using meds that block acid can actually hasten/worsten a developing inability to break B12 out of food.

Second, many doctors still don't know they should not only be testing people for B12 deficiency, but if such is revealed (and the MMA and homocyseine tests are probably better indicators of this than a "borderline" Serum B12 level), megadose oral supplemenation (on the order of 1-5mg/day) is generally just as effective as injections--and cheaper. There is enough passive absorption of the megadose to begin to build B12 levels back up. Methylcobalamin forms are preferred if can get them, as the B12 is already in absorbable form. (Commercially prepared cyanocobalamin will work for many people, but why tax the system getting rid of the cyanide radical?)

Part of the problem is that "normal" ranges for serum B12 are set much too low in the US--usually at the 200 level. In Japan and many parts of Europe, the low normal boundary is set at 500.

Many of use here take B12 even with higher initial levels than that as a form of neuroprotection--there is no known toxicity level, and people have taken up to 36mg/day in Japanese studies without ill effect (the body tends to use what it needs and discard the rest). Most of us on the peripheral neuropathy board, for example, feel better with our serum B12 values in 4 digits.

Several people who frequent these boards are among the world's leading lay experts on this subject--one should search out posts by Rose, MrsD, JCCglutenfree, and Paul Golding for more info.

Thanks Glenn, for the referrals. I also agree about acid reducers. Anyone on them should get B12 level checked. Drs. hand them out like candy and forget about it. Cindyd

Hi Cindy,
I think you will find this site very helpful. I found many caring folks here... true friends. Thank you for your story. I'm not sure why my B12 suddenly became low. I had my blood tested again this week. It's still low. I'm taking B12 supplements. I go back to my neuro the 29th. May he can shed some light on it. My white count was down. It is now up a little but still a little low, but now my red count is down. Also my potassium is low. Don't know for sure what is going on. I take Betaseron injections every other day for my ms. I hope that is not what is causing it. I hate to think about having to stop those. I have been in such hope it would be the miracle worker to slow down the ms.

So do you know what caused the B12 deficiency with you? I didn't read all the other posts so I apologize if you've already explained. I'm so exhausted these days that I can't stay online for more than a few minutes at a time.

Take care and wishing you the best!:hug:
~Friend

Hello and welcome to Neuro Talk, feel free to explore and do not hesitate to ask questions concerns and or worries you may have. Folks here are fantastic helpful and kind, again welcome to NT

Hello Friend2U, I love your id, and sure could use a friend. Just received official diagnosis of pernicious anemia. Gee, it only took 8 months... as I deteriorated. Anyway, if it's ok with you, I'd love to call you friend.

:)

I'm glad you're out of the medical wonderland. It's a jungle out there. You sure went through a lot of expensive and time consuming tests to get to the bottom of it. I guess you didn't have any choice in that since you're not a doctor. It's good to know that all those other areas are in good condition. That's a peace of mind to know.

I too have used sublingual B12 (GNC store-tastes better-use after you brush your teeth, and other times too) for probably 20 years. Need some right now. It does help boost the body so you go do a little more.

I hope you continue to improve. :hug:

Started MethylB12 5000 sublinguals a few days ago. Also doing megafolonic, B-right, and am ready to add AdenosylB12 in a week. So far no effects. Thats good for me, as was kind of anxious about the change. Put hubby, (345) daughters (505) and (311) and sister (465) on it also. So far no start up symptoms to report. My 15 yr old daughter was just diagnosed with hypothyroidism this week also. I had had her to her pediatrician for a B12 check. He did a few tests and said no reason to test her. I immediatly made her an appointment with my own doc. Being 15 she needed a step up anyway. My docs a female. She did a few more tests and concluded 0.01 TSH level. Hypothy . Sure glad I did the doc switch. She has not had a good year in school, from a child I didnt have to worry about in that respect and has needed much more sleep than usual. Being a dancer 5 days a week for 2 to 3 hours at a time plus school, I dont know how she has been doing it. Now I know why the grades dropped. Waiting for specialist app for her. Will keep updating.

wow cindy thank you
 

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?

my baby boy and b12
 

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.

No, none of us mind. And welcome to Neurotalk.
 

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.

If one has had evidence--
 

--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

I had a reply all typed out here and hit preview and thought it posted. lol @ me for screwing that up!

basically I know I have Pernicious Anemia from Ulcerative Colitis and the Pernicious Anemia mimics MS exactly.

Math and odds would suggest I do not have MS.

I really just wanted to ask if b12 at the doses I am taking would reverse and hide MS symptoms? I would assume not.

My symptoms have virtually all vanished except for that two hour window where my nerves go nuts.

I always have a couple of spots that bother me on my left wrist where I get numbness and weird sensations and my calves spasm under the skin and varies in intensity. These are permanent.

I also have one pupil larger than another one only in dim lighting.

I've read about others in here with this as well as symptoms i've not had for Pernicous Anemia. basically all the symptoms you guys have named are the ones I have or have had.

Since I have ulcerative colitis to begin with i do not get all of the nutrients from my food so getting a multivitamin that has Vitamin D3 in it would certainly help.

I lose weight easily but gain it if i eat stuff with high bad fats which i don't want. Waste passes through me too fast from the intestinal disease that I lose vitamin intake.

Anyway thanks everyone.

I look like a jerk worrying about MS to someone who has it i'm sure. I apologize sincerely.

I cannot believe how well you guys triumph over evil in here. I really love the threads i have been reading all over.

You guys are the best! :hug:

:) hello Cindy, I have Pernicious Anemia, I have had B-12 shots since 1990 I used to get a pill now I get a needle from my nurse every month of 1,000 --- forget the dosage but its a lot-they only go as far as 1,500 per month-I am fatigued 24-7 but I also have MS--so its quite the battle, cant wait to hear more about you Cindy'do write me a reply when u have the chance''
Take care and GB,:hug:
Terry-Joy
AKA-TJ

You are not Alone-I am with you
 

Hi Cindy, i had tears in my eyes as i read all your symptoms. Thank you for being so detailed. It's so important for us to share. I feel like my symptoms will never go away. I have been doing 1000 cc's every 4-6 days for about 2 months. I have celiac disease, pernicious anemia, and atrophic gastritis.

I was taking Prevacid for 10 years. No doctor told me to ever keep an eye out on my stomach. The Prevacid only aided in my atrophic gastritis.

My symptoms: dizziness, heart palpitations, numbness, back of the head is numbs, feet numbmess and legs, vision is blurry and i am unstable when i walk.
My symptoms have gotten better. I have had some better days and have been able to eat a little bit more with an appetite. But i still lost 12 lbs. I have stabalized.

I was prescribed Carafate too. I am better than what I was, but anything was better than that. I too went to the ER and under went all the tests. Thank God that Dr. Fayad, was wonderful and immediately got me on b12 injections. But i do see the resistance with B12 testing amongst doctors. I also have a homeopathic doctor who is big into b12 and folic acid. my levels were at 140. I am not sure where i am at now. but i am just trying to listen to my body and when i think i need the b12 shot i take it.

You are not alone-I too want the depression to go away, I want to be myself like I was, strong, active, and zooming about. But it has been so slow to get better. I sometimes feel like I am taking too much b12, but at this point I am taking it and it seems to make me feel better. I am not anything like I was before this b12 crash, not even close. But I am just a little bit better.

Neuropathy, i don't know if it will all come back. I haven' t seen a neurologist yet. My doctors seem to think it will come back. Every thing i read seems to point to a year-to years of recovery.

I have read that the methyl b12 might be better to absorb. I know I don't absorb the b12-i am on a gluten free diet. i am still drinking milk. i hear that you all take the sublingual b12.. i am not sure if that will work for me if i have pernicious anemia and i don't absorb b12. maybe someone could respond.

REmember you are not alone. If your doctor doesn't want to check your b12 levels get another doctor. there are good doctors out there who are big on b12.. find one. i know you can. take control of your health. there is hope. i will keep reporting on how i feel.
have hope!

atrophic gastritis pernicious anemia-You are not alone
 

I had tears when i read your post. thank you so much for you explicit symptoms. you are right we are not alone. i feel the same as you do.

I have been taking 1000cc of b12 every 4-6 days for about 2 months and also have been taking Carafate. AFter my 12 lb weight loss and no desire to eat, I do have an appetite, although not like before.
10 years ago i was diagnosed with acid reflux and was given Prevacid for those 10 years. No Dr. discovered my Celiac Disease, nor did they ever check my b12 count. i am certain these issues were prevelant at this time. however, i managed to get better until about 3 months ago when i completely shut down. My b12 count was 140, i had atrophic gastritis and pernicious anemia and celiac disease. luckily i have 2 very good doctors -Dr. Fayad and Dr. Milne and they put me on b12 injections immediately. But, the one dr. told me to do it weekly for a month then monthly. There was no way i could stay on that regimine of b12. thank god i read many posts and am just listening to my body. i have been able to last 6 days without an injection. so far that's been the longest.

I am going to try the Methyl b12. See if i have a better response. My recovery has been very very slow. When i got the diagnosis i thought the shots would relieve the symptoms. but that is not the case. i am a little better but anything was better than what i was before.
Went to the ER got the heart completely checked -all was good.
My symptoms:
heart palpitations-at night especially
anxious
shoot shocking feeling in my stomach when the phone rings or with loud noises
numbness at the back of my head
numbness at the bottoms of feet, hands, arms, legs
back pains, neck pains, arm pains
wake up at 1am 3am 5am.. hard time sleeping
depression
eyes sensitive
dizziness
walk very slow unbalanced
hard to focus
afraid to drive

These symptoms were so bad before Now i have them but they are less-days are bad and good. i just want my old self back. i want to feel like i did before. I have been cooking cleaning, walking, yoga and swimming, and i drive sometimes. i am retired 67 years old, and am fortunate that i have a good family and i don't have to work.

I just wonder if there is anything else wrong with me.. its hard to believe that b12 deficency is the cause as well as gluten. i am on a gluten free diet, but am drinking milk. i have read that neuropathy takes 6 -12 months to come back.
Has any one come back completely and living their normal lives? I know this is not a death sentance, but some days it sure feels like it.

PA diagnosis
 

Hi Cindy I am new to this message board. I have been sick for about 7 months and came across your post when searching for causes of my symptoms.
I am a 27 female, prior to getting sick, very active, energetic, healthy person. On June 1, of 2010 I started becoming very dizzy and slight off balance at work. I felt as though I was going to pass out. From there it all went down hill. I went home looked in the mirror and I was very pale with dark circles under m eyes and knew something was wrong.
I woke up the next morning with headaches, stiff neck, light sensitivity. I felt like I had the flu but it was not going away. Numerous visits to the ER, doctors, lots of blood work, MRI of the Brain, CAT scan of the sinus area and ears and mutiple doctors telling me I had anxiety I was about to give up and stop searching.

Some of my continung symptoms include, weight loss (20 lbs from about 135 to about 115) I'm 5'6, severe fatigue, issues digesting food, severe lower adominal pain, night sweats, weakness all over, dizziness, tinnitus, headaches, pale skin, blotchy red skin with itchiess of forearms and front of legs, easy bruising, racing heart, shortness of breadth at times, loss of vision after laying down at times, extremely cold hands, dfficulty concentraiting ( and working at a law firm this is not good), anxiety and depression which is totally uncharacteristic of my personality.

I just wanted to thank you for your post. I am not sure if you still read this or not but it made me feel better about how I have to keep pushing for an answer even though doctors keep pushing anxiety medicine down my throat. I went to a hemotologist today and had a ton of blood work drawn up.
That was when I first heard of being tested for different types of anemia. I also have some type of 24 urine test that I have to do. I was tested for b12 but was told by an otonuerologist that it was okay. I do not know the results of that bloodwork. Is it possible that b12 test could come up normal? but still have pa?

Thank you again and it has really helped me get through these days. It has been a long 7 months and I don't even care what it is I would just like an answer so I can get back to my life.:)

Pernicious Anemia
 

Cindy, I also have pernicious anemia. I have to get intradermal injections every month...but lately as I near the end of the month, I start feeling horribly bad. My husband spoke to the doctor as he had endoscopy and she told him that I should come every 3 weeks for the injection....that it's ok and that B12 in your body won't hurt you. My husband is still in denial having pernicious anemia, I have an autoimmune problem. He tells me I think too much about my health when that's not true. I get severe pain on the crown of my head from my spine spasming and it feels like someone is taking a knife and jabbing me. It is hard to concentrate when you are feeling something like that and I've had to deal with that since I had colarbone surgery 12 years ago. The pain on my head started 2 weeks after the surgery but it would come (and would feel traumatic like my brain was frying on a pan) and then go away for months.

Before I was diagnosed with Pernicious Anemia, I could barely hold up my back in the shower. I would start to cry and hunch my back feeling my muscles weak in my spine. I also reflux my bits of food sometimes and burp every second for 1 hour which is exhausting. I get foam coming up and then I'll take 20 mg of pepcid which seems to help get rid of the foam. My daughter told me that I have to watch what I eat.

My husband isn't very supportive and I did go to a pain management doctor who injected my neck with steroid and cortisone but it didn't work. I was thinking my spine is being pulled by my colarbone healing incorrectly, but docs won't do anything about it as they say they wouldn't consider fixing my shoulder. It's slightly leaning forward and I get nerve pain in the front of the arm by the shoulder.

I was told that an autoimmune disease comes with pernicious anemia but docs can't figure what it is as I was tested for rhematoid arthrtis and Myasthenia Gravis and don't have it. I get shooting nerve pains in my legs, in my upper arms, throbbing in my thoracic, throbbing in the back of the skull of the head...it's awful.

I don't know of anyone who has pernicious anemia! I was wondering if they have similar symptoms as I do.

Thanks for listening!

Welcome to NeuroTalk.

You can take B12 orally and it will work for pernicious anemia.

You just have to take a large dose of 5mg once a day on an empty stomach. Oral has been shown to work as well as injections. I don't think once a month injections are effective for those really low in B12. You need them more often than that.

Methylcobalamin is the ACTIVE form and available orally. Your injections are most likely cyano form and that is synthetic and may not work well in 100% of the patients using it, because there can be failures in converting it to the active methyl type.

Here is a thread with information and medical links for you to read:
http://neurotalk.psychcentral.com/thread85103.html

Methylcobalamin costs pennies a day, and is available online at many discount outlets. I have purchased it at iherb.com and also at Puritan's pride. There is no reason to use cyano anymore with the affordable superior product now available.
The methyl form is not commonly available in stores yet.
Do not buy "timed release" forms.... B12 cannot be absorbed well from those types.

I know this is an old thread but I have read cindy's story over and over again for comfort and reassurance. I relate to a lot of the symptoms, but not all (of course we are all different). I am having a lot of trouble with a low appetite and being able to eat. I also feel very weak a lot of the time, and I am losing muscle mass. I also get a lot of cognitive impairments, feel like I can't remember something I did five minutes ago, feel like I'm going psychotic or am losing my mind. It's a scary feeling and hard to keep calm when I don't feel like I'm in my right mind, but I read that eventually, if gone on long enough, low B12 can do this to the brain. I just hope that I can heal from it.

I have doctor visits coming up to see if there may be something else going on and also why I have low B12 in the first place. This is very scary. I just hope that nothing else is going on and that from the little I am able to/wanting to eat throughout the day that I am absorbing as much nutrients as possible (had doctor take blood yesterday to run tests on all B vitamins, other vitamins, other blood levels related to B12 potassium, magnesium, iron, MMA, homocysteine, etc. - hoping it all shows as "normal serum levels" so that I can get on with repair and recovery). BTW I am only about two weeks worth of treatment in, from shots (had about 10 I think???) and now going to start/continue with sublingual B12 (finally found a brand I can tolerate - was scary when I was taking some out there that made me feel even worse!!!) and such. I still feel very sick in other ways, though, which scares me/makes me think there is more going on. It also doesn't help that my serotonin is probably devestatingly low as I stopped about 10 years worth use of antidepresseants about 60 days ago and am in the deeps of withdrawal. Can't take ADs anymore, though, as I had an adverse reaction to the last one I was on, so I had to come off, no matter what. Every single day is an immense struggle with all this going on, and it scares the daylights out of me.

Thanks for putting your story up here. I hope that I can recover from all of this with time, and patience, and the help from others.

how do you know
 

When you are recoving from pernicious anaemia I have started getting an increasing appetite all the sudden after taking up to 10, 000 mcg a day plus high doses of iron . Am I getting better? My doctors keep sensing me home to die I had to figure it out on my own this is the fiest time I've had pa I know its not just anemia I've had basic anaemia. Does this mean that I am recovering? Thank you Suffering in Boston.

Welcome to NeuroTalk:

You'll have to have testing now and then at the doctor's to
monitor your treatment. That is the only way to know for sure.
Depending on how long you were low, you may feel some improvements, like more energy, strength, and fading of negative symptoms.

Alot depends on how long you were low. Neurological damage from low B12 can be permanent if the spinal cord has atrophied.

Some people recover, some only partially, and some may have permanent nerve damage. It is not possible to speculate on the internet as to your particular situation. You'll have to discuss that with your own doctor.