Another B12 victim

[asif139]

Hi everybody
My name is asif i am 25 years old from Pakistan. My story is similar to many out here. I am a healthy person with no previous health issues, eat well do excercise regularly. It all started. about 5 months ago when one day out of blue i started feeling bad, feeling that something was wrong with the body and mind nothing specific. After a few days of feeling like that i became OK again. A couple of weeks later i started having tingling under my feet, tightness in the chest, breathing difficulty, severe sort of stomach discomfort also at the same time depression and anxiety got hold of me. i had no clue what was happening to me my doctor told that it was stress and that i should relax and prescribed an antidepressant and multi-vitamin as well. He also ordered a few tests and they all came back normal. i also went through endoscopy but nothing significant just "non-specific inflamation" of stomach and small intestine. My gastro put me on a PPI. That relieved the stomach problem a bit but my other problem were worsenening i was starting to have balance problems, dizziness, shock like feeling in the body, twitching from head to toe, server fatigue, severe headache 24 hours, sleep problems and on top of it all my head was getting increasingly foggy i could not concentrate on anything at all. It all happened in a span of 3 months my life had totally changed. Everyday was getting tougher than the previous and i had started to loose hope. Oh i almost forgot to mention the psychosis phases that i was having. out of frustration i changed my doctors and my new doctor order B12 test. The result came back 180 pg/ml which my doctor told was very low. He immediately put me on B12 shots twice a week which i been taking for the last 2 months and also 1000 mcg oral methylcobalamin everyday. Initially i couldn't believe that it was all due to this one vitamin and searching on internet and reading other peoples stories made me realize how deadly this could have been had my doctor not caught this. These 2 months of treatment have not been easy by any means. Symptoms were going only to come back later i was so scared that i might be like this whole my life but Thanks God for the past one week i am feeling pretty good. i am thankful to my doctor for diagnosing and then treating me and people like rose and sally (from another forum) for making public aware of this serious problem and nurturing hope that there are better times ahead.
Thank you all very much.

[asif139]

My stomach problems started at the same time as other problems, so is there a link? one thing responsible for another? H. Pylori and Intrinsic Factor Antibody are both negative. Could this be atrophic gastritis. especially as my endoscopy report says "chronic non-specific inflamation". I am going to discuss this with my gastro. Thanks for any comments.

[rose]

Good for that doctor! :) A rare one.

Gastritis often precedes malabsorption of B12. It is possible that you had malabsorption for quite a while before experiencing symptoms. Many who have serious malabsorption due to gastric atrophy do not have digestive symptoms, but many do.

There can be autoimmune-caused atrophy that does not show in the intrinsic factor antibody result.

Were you checked for antibodies to parietal cells?

Usually one of those two tests will be positive when malabsorption exists, but not always.

If you haven't read the information at my website already, I encourage you to do so. It is not commercial and it won't take a long time to follow each link and read the information. After you have read it, I will be happy to help with further questions.

rose

[asif139]

Thanks rose. i have already gone through your website its a great knowlegebase. I have learned that there are many reasons for one to be deficient regardless of diet for e.g. autoimmue problems, H.Pylori, celiac etc. but has anyone ever reaserched on another possible cause "liver dysfunction" i.e. inability of ones liver to store B12. I have read people saying that their symptoms start coming back if they miss their scheduled shot even after taking it for many years. how is your expericence? Also how are other out their doing especially Abbie and crytears.

[rose]

Yes, in fact I would first suspect liver problems if someone doesn't store well.

Many others just get a shot once a month (or less frequently) without anyone ever checking to see whether their stores are being filled. And often they are not. Many of those are just never getting what they need to fill their stores to the point that they can coast without getting low. That, of course, is one of the advantages to the daily oral dose. For most people it is better in the long run. And even better if the cobalamin is methylcobalamin.

rose

[Cry Tears]

Find a doctor who was educated into checking out B12 being possible cause of your problems.
I continue struggling with health issues...mostly because of auto-immune stuff like Crohns disease, hypo-thyroid, Fibromyalgia and other pain issues.
IThankfully am much much better now compared to pre B12 "therapy" with Methyl B12 sublingual,
Jarrow brand...I find is best form....but because my body does not store well,
I must take this every day...if not, then I begin to suffer the old problems, such as loss of balance...
thats my first clue I need to go take a B12 pill.

I was doing the B12 injections, did them myself! Cheep way to go, but ouch!
But I've read that the sublingual Methyl B12 is more effeciant than the shots which are
Cyanacobalamin and NOT the Methylcobalamin which I've read is hard to get ahold of in injectable form.
I've had long term irritable bowels...d-reah is my middle name!
I also have very active Crohns disease and take meds for it and had double bowel resections 4 years ago.

My liver is enlarged and very dense, every new doctor I see tells me this after examination....
perhaps because I had viral hepatitis back in 1973 and was very ill and off work 4+ months.
Also shows up this way on x-rays and other scans.

I've tied my muscle pain and d-rea to food allergies and have gone as far as striving for a gluten free diet...
its very hard to do, espeically when your family is completly vegan. But if I eat even one bite of wheat,
I get d-reah so bad can hardly stay off the pot.
Since stopping eating "problematic" foods my intestinal pain and d-reah are gone....
thats something I haven't had happen in years and am so glad I've listened to those who're knowledgable of
Ciliac Sprue diseases and food sensitivity/allergys. Could be the cause of my Peripheral Neuropathy.
I'm hoping one day this also gets better.

Are you veggie? Do you know how you got B12 deficient?
I guess it doesn't matter how, just that you know you ARE....
I suffered way too long, even tho I asked if this were possible, was told no!
Well big fat....DUH! I WAS!...223 is very low, NOT normal as was told!

Can you do those B12 injections yourself? Is easy to do...cheep too!
Hope you get better every day, thanks to the people here on these forums who're so helpful and share their knowledge to help us.
And big thanks to Rose for all her help!
Cheryl

[asif139]

Chery, I am sad to learn that you still suffer from health issues. I hope you will get well soon. I am generally much better that i was couple of months back when i started my treatment. Though i still have a fair chunk of my problems coming and going. One day i feel that i am as good as i have ever been and next day i feel as if i am not gonna live much longer. This B12 is plain TORTURE. mental and physical. One moment you are laughing next you feel like crying. anyways, i am not exactly a veggie but been eating meat rarely. no beef only chicken once in a week. Could that be the cause in my case? i will ask my doctor to do further testing to find a possible cuase other then diet. Also how long before i should expect to be fully fit?

[rose]

It is unlikely that you were deficient in B12 because of diet. Most people would have to be vegans for years to become deficient due to diet.

Lack of B12 can certainly be "torture." Not B12. ;)

A couple months is a very short time. It is common for people to improve for much longer than that (often a rocky road), and if deficiency has done severe damage, even years.

My B12 website under construction:
http://roseannster.googlepages.com/home

rose

[jcc]

Hi everybody
My name is asif i am 25 years old from Pakistan. My story is similar to many out here. I am a healthy person with no previous health issues, eat well do excercise regularly. It all started. about 5 months ago when one day out of blue i started feeling bad, feeling that something was wrong with the body and mind nothing specific. After a few days of feeling like that i became OK again. A couple of weeks later i started having tingling under my feet, tightness in the chest, breathing difficulty, severe sort of stomach discomfort also at the same time depression and anxiety got hold of me. i had no clue what was happening to me my doctor told that it was stress and that i should relax and prescribed an antidepressant and multi-vitamin as well. He also ordered a few tests and they all came back normal. i also went through endoscopy but nothing significant just "non-specific inflamation" of stomach and small intestine. My gastro put me on a PPI. That relieved the stomach problem a bit but my other problem were worsenening i was starting to have balance problems, dizziness, shock like feeling in the body, twitching from head to toe, server fatigue, severe headache 24 hours, sleep problems and on top of it all my head was getting increasingly foggy i could not concentrate on anything at all. It all happened in a span of 3 months my life had totally changed. Everyday was getting tougher than the previous and i had started to loose hope. Oh i almost forgot to mention the psychosis phases that i was having. out of frustration i changed my doctors and my new doctor order B12 test. The result came back 180 pg/ml which my doctor told was very low. He immediately put me on B12 shots twice a week which i been taking for the last 2 months and also 1000 mcg oral methylcobalamin everyday. Initially i couldn't believe that it was all due to this one vitamin and searching on internet and reading other peoples stories made me realize how deadly this could have been had my doctor not caught this. These 2 months of treatment have not been easy by any means. Symptoms were going only to come back later i was so scared that i might be like this whole my life but Thanks God for the past one week i am feeling pretty good. i am thankful to my doctor for diagnosing and then treating me and people like rose and sally (from another forum) for making public aware of this serious problem and nurturing hope that there are better times ahead.
Thank you all very much.

My many hopes for better times ahead! I am also a B12er indebted to Rose :). My neurologist uncovered it, but never really explained the seriousness of it, and at first I thought it was a cheap attempt at a placebo fix! I also tested negative for pernicous anemia related antibodies so I don't know for sure what caused my B12 deficiency. However, gluten sensitivity and pyroluria are two things that I found that are present in my family... and may be related. You can check the link below my signature for more info on that.

I think you can be hopeful that better days are ahead~ but keep your feelers out because often times there are co-existing conditions...and more than one thing may need to be addressed. Getting the B12 deficiency corrected is monumental though!

Cara

Cara

[asif139]

Do you have symptoms as soon as your stores deplete and damage starts or does it go on hidden with no symptoms and you only start having symptoms when the damage has been considerable? Trying to figure out how long it could have been going on. Also can somebody please explain what body systems B12 deficiency damages along with the symptoms that damage to that particular system results in. Like numbness/tingling etc caused by damage to nervous system. Why this incredible fatigue/weakness, is this all due to nerve damage? (though my fatigue is better now, i go play squash again on my better days :-)

Regards
Asif Mushtaq

[rose]

Those things vary tremendously, for at least a few reasons:

1) Symptoms can be very slow coming on, and/or be subtle for a very long time (sometimes to subtle to notice until an exam shows the signs) if malabsorption is not severe. In those cases, a very long time might not result in severe damage. But malabsorption can become severe, and then (if already somewhat low) things can begin to escalate very fast.

2) If stores have been filled completely, most people can continue to improve on those stores for a long time. It is common for people to take two years to begin seeing worsening again. Of course, it is not a good idea to allow that to happen. And people store differently: some rare people need to have B12 constantly.

3) People are affected differently. Some are damaged first in one way, while others are damaged in other ways first. Some have damage to their motor nerves early, while most develop it much later if not treated (and if they don't die of heartfailure or something else caused by severe B12 deficiency first). Some develop severe psychiatric problems early, but most do not until much later. Some have pain, while others do not have significant pain. And on it goes. At some point in deficiency, every cell in the body is affected to varying degrees. And, yes, fatigue is common, but not always an early complaint. And weakness can also occur, while not everyone is affected that way.

More on my website: http://roseannster.googlepages.com/home


rose

[asif139]

Thanks for your reply rose. I have a few more questions :-) . I didn't have the MMA test done just serum B12 which was 180 pg/ml. As you say that serum B12 is not reliable so how could i be sure now that whatever happened to me really was B12 related?
After 2 months of taking B12 some symptoms have resolved completely like numbness in hands and feet, headaches, twitching, rapid heart rate (used to be around 100 now down to 70-75) others are there but not as severe and disturbing as were before like fatigue, mental and stomach problems. Another thing is that my condition doesn't stabilize at a point i could be very good for a few days and then start having problems again (though surely not as severe as before). Is this a good thing or bad? i really get frustated when i have them back start thinking that i might be like this forever, God forbid.
Could gluten be playing any part in this? i never had diarrhea. I am going for another serum B12 how many days before the test should i cut off my intake?
I hope you don't get irritated by these questions. I am just trying to get hold of my fears.

Thanks
Asif Mushtaq

[asif139]

After feeling so good for couple of weeks i am down again for the last week. terrible fatigue like whole body is under great weight. Stomach problems getting severe. Also bouts of severe nausea and cold sweating. Feels like i have lost sensation in the body. Its plain torture. Is it common during recovery?

Asif

[annelb]

Could gluten be playing any part in this? i never had diarrhea.

It is not unusual for those with gluten sensitivity to have vitamin deficiency including B12 deficiency. Most people who are being diagnosed with celiac disease or are finding that they are sensitive to gluten, do not have diarrhea.

I have gluten sensitivity and my main symptoms were peripheral neuropathy and overwhelming fatigue. I had acid reflux, but I never had diarrhea. I had been on B12 for about 10 years and my PN and fatigue continued to worsen. When I started a gluten free life, my fatigue vanished and my PN greatly improved. I am on no medications for the PN other than my supplements. Oh yeah, my acid reflux is gone too.

I can't tell you if gluten is playing a part, but it surely is worth looking into. Have you looked at The Gluten File? http://jccglutenfree.googlepages.com/ This may help. There is also a forum for Gluten Sensitivity/Celiac Disease here on Braintalk.
Anne

[Cry Tears]

Hello Asif...I am so sorry to hear about the "nightmare" you've been experiencing.
I found BT years ago when I too had been suffering a long bout of medical nightmares.
Doctors could only offer scripts to "mask" symptoms rather than find the sources of problems.
When they reached their level of incompetantcy they simply refered me elsewhere..
In between my foggy slumbers, using my laptop in my comfortable bed
I researched what could be the cause of idiopathic Peripheral Neuropathy.
I am non diabetic and have perfect blood sugars.
It was late August 2004 when I found Brain Talk.
Thankfully Rose answered my desperate plea for help and suggested I may be B12 deficeint...despite my dr's telling me I tested normal range, 232!
Thankfully I took charge of my own health and I began taking it after my husband found a store that carried it.

Sept 3, 2004 was my very first sublingual tablet along with other B supps.
10 days later, on Sept 13, I was out of bed doing laundry!
From that day foward, I was no longer sleeping 24/7 after half year of 100% bedridden.
Then I needed help just with basic grooming!
My husband hired in home care for me when his work needed more attention (he works in our home/office).

I don't think Rose ever tires of helping others with B12 deficiency and other health issues that goes with that.
She's always been very patient with me over the years while I've been experiencing some scary symptoms during my bodies repairing from the deficiency.
I have zero doubts my life was spared back then as I had spinal cord involvment...when put my chin to chest, I had elecrtic shock down my spine. It was screamingly painful.
It has NOT been easy as I was deficient for a very long time and who knows how damaged I got during those years of deficiency.

I also have absorbtion issues because of Crohns disease and am missing several feet of small intestines (from 2 bowel resections) so I don't "store" and need to take it every day...or else!

Please don't ever give up!
I can almost promise you some day you'll look back and know you found the right place here on BT.
You may experience mild repair symptoms, and hopefully you'll be back to normal soon.
But be prepared for some scary symptoms, those will/may pass quickly, so take note of this and remember Roses' warnings regarding this.
Or you may be blessed enough to not experience anything more than mild short term bothersome symptoms.
But because everyones body is different, it's a toss up from here foward.

My advice is never stop taking it no matter what!
I foolishly did....and then suffered another bout of bothersome symptoms.
We'd vacationed a remote place, couldn't find Methyl B12, felt would be "OK"...just those 2 weeks, but extended into nearly a month.
Who could pass up staying in a beach front condo for free on Kauai Island when the weather was perfect 85* every day!
Don't ya just hate it when you've got to house sit in those places!?!?!
The condo owner desperatly needed us to continue staying there so her wild birds could be fed every morning....someones gotta do it!
Besides....back home was cold and raining! It NEVER rains in Oregon!
Ha! Is raining right now...got up to 68* yesterday! This is SUMMER?
Hope this has helped you just a little in understanding that B12 def takes different forms as does your bodys repairing.....all vastly different.
Blessings, cheryl

My body retaliated for some time as it played "catch up"...taking months to gain back what I'd lost.
But...what this did was PROVE my symtpoms WERE from the B12 deficiency!
My doctors could plainly see what a drastic change my body experienced without B12!
To my doctor, my muscle twitching was very visable,
could see muscles ripple and vibrate.
I could only tell about the burning of PN felt like, muscle weakness and
how fatigued I was, on top of losing all sense of balance.
For me my balance loss is the biggest indicator of this deficiency.
I wonder if the fatigue is caused from the constant muscle twitching!
When I have severe muscle twitching, a few days later I begin to have muscle weakness to where I loose my footing and my legs just unable to support my body up.
Thats when I pull out my rolla walker...but I know better than to miss taking the B12...its just stupid on my part...but hey...part of B12 def is tied to mental problems...almost like I have Dementia!



For me, just a few months of taking the B12, I had enough energy to decorate a C-Mass tree for auction @ Oregons "Festival of Trees" held at our civic center. Of course I had a team helping me, but I could never have done it without the Methyl B12!

My tree brought in $7,100 profit for children and elder's medical charities.

Its just too bad all those old Postings and Threads got lost in the big crash of BT...my story plays out like a soap opera.
I went from 100% bedridden 9/04 to being almost normal by Thanksgiving weekend when we decorated this tree.
I'd dreamt for years of decorating a tree for this function and finally my years of planning and purchasing goodies came into fruition.
I decorated it with Scotty Dogs playing the bagpipes.
I even had a live bagpiper playing in my tree setting the night of the auction.
What a blessing it has been to have found Brain Talk, that has helped so many and in turn I was able to give back in other ways.

So take heart....be ever so thankful you've found BT and have the support of so many caring knowledgable ones willing to help you thru this.
I pray for you will only be a short time before this is only a past memory and you'll be out running a marathon!

[asif139]

Thank you so much cherry. Your support means so much to me. Thanks all again.

[rose]

Thank you, dear Cheryl.

Asif,

With your symptoms and that very weak B12 result, it is very likely that your problems are due to insufficient B12. There is no way you can find out what your B12 stores were like then, but you can make sure they are good and full and stay that way.

Gluten is definitely one of those things to look into, because sensitivity to it is another one that is terribly underdiagnosed.

I suggest that you remain alert to other possibilities while you continue your B12 and make sure the rest of your nutrition is good. And time will likely tell what is B12 related. Think long-term, as I emphasize that some things take days or weeks (and may not even be perceptible as your body works to improve), some take months, and if damage is severe it can improve for years. The thing is to make certain that no damage/further damage is due to insufficient B12.

It is common for symptoms to worsen as the body repairs. Can seem like new symptoms, as things change and the nervous system adjusts to interpreting new information, or worsening of old. It is very common for fatigue to hit after what I call a "honeymoon" period. The timing you describe is very familiar.

You should stop your B12 at least a few days before any samples are drawn for another test. And it is sometimes possible to get a pretty good idea what is going on when B12 doesn't go up very fast in spite of large doses. But remember that the second B12 cannot definitively tell what the situation is.

You can be tested for antibodies to parietal cells and intrinsic factor. That will not tell in 100% of cases whether there is malabsorption, but one or the other will in most.

Make absolutely sure that your doc doesn't think that an MMA test now will tell whether you malabsorb. It almost surely is normal now, even if it was high.

http://roseannster.googlepages.com/home

rose

[asif139]

Thanks rose. One more question :-) i have read that folic acid masks B12 deficiency. So is it possible for somebody to be low on B12 and not to show any symptoms untill the deficiency becomes severe.

[rose]

The folic acid can mask the signs of anemia that often develop. Since most doctors think all who are B12 deficient are anemic, this makes diagnosis very unlikely.

Other symptoms of damage would develop normally, but often the symptoms of damage are subtle for a long time until damage is quite serious.

It varies greatly from person to person.

rose

[asif139]

Its been two months of taking B12. Slowly I had improved GREATLY by the end of 2nd mohth i was almost 90% of full fitness. BUT for the past week the symptoms are crawling back again. muscular spasms electric feeling under the feet, mental slowing/fog, sleepiness, slight numbness of toes etc. Though they are not as severe as they were at the start of treatement. I am a little worried. Is it normal for symptoms to show up again after completely healing. Also my muscles are a little sore, especially back and neck area. Appreciate any help

Asif

P.S. i have been taking around 1000mcg oral methyl B12 daily in two doses of 500mcg each. as well as injecting 500mcg methyl B12 twice a week for past 2 months. Is it enough?

[Cry Tears]

Hi again Asif...Rose will no doubt jump in with better answeres.
I will say about myself what little I know is every body reacts differently in both repair time and damages done while deficient.
For me it began with muscle weakness, then twitching, then Neuropathy and then bed ridden fatigue where I needed in home care just for daily living.
I slept about 24/7 for entire summer till I found BT forums and began taking B12 per Roses' advice...that was Sept 3, 2004...within 10 days I was able to get out of bed, the first time in a very long time.
It was almost a miracle the way I reacted to taking just B12 for 10 days.
Then 3 months later my EMG and NC test proved back to normal although I do have some burning on my feet.
I've had many other scary and bothersome symptoms while my body makes the repairs...who knows how long I was deficient and damage done.
It may take my body years to overcome this...then again it may just be a few more months.....or not at all.
But one thing I'm certain of....I'm much better than I was back then!
Blessings, cheryl
PS...make sure the doctor does proper B12 testing...Rose will tell you which. AND your doctor may not know a thing about B12 as the med books are very outdated when it comes to vits and supps.
I'd take it despite your doctors saying you're normal range...sure glad I did, if not I'd be taking a dirt nap!

[rose]

Asif,

It would be wise to take at least two of the 500 mcg tablets at one time, because that will provide a better chance that you are getting something out of it if you are malabsorbing severely.

A honeymoon period is common, at which time symptoms might be so lessened as to lead a person to believe everything had been repaired. The body may still have work to do, in which case reappearance (or even multiplication of especially weird symptoms) would be common. I experienced a honeymoon period, which led me to believe I would be back to normal in weeks with no difficulty. I was very wrong, as my body was actually just getting ready to do the hard work of difficult and serious repairs. I have learned during recent years that many people experience their own versions of the honeymoon.

It's not a good idea to assume that something else isn't also happening, but that is common.

As to B12 testing, remember that if you do have any B12 testing now it will not show where you were before getting B12 in tablets and shots. Sometimes it is valuable to have an idea where you are after taking B12, but you must know your stuff because many especially ignorant doctors will think that how you test now means you weren't deficient before.

rose

[bigdrig840]

hey i read on consumerreports that an overdose of vitamin b6 can cause nerve damage in feet and hands. so dont be so gungho with the natural solution all the time, cause that's not necessarily the answer, but if it works for u then go with it. vitamin b12 withdrawals?? what!? lol. no, but seriously i use a combination of natural(like fish oil) and medication and it works, u just gotta be informed.

[asif139]

For the past week i have been experiencing really strange symptoms. It starts from the head and feels like all the energy has been sucked out of my body. My body feels like paralysed unable to move legs or arms properly. If i stand i feel like falling down my legs don't support my body. This whole thing last for 15-20 minutes. At the start of the episode i have a few heart palps and fast pulse as well. But they ease out quickly. Very very scary. I am going to discuss this with my doc tomorrow. Has anyone experienced anything like that? Genrally speaking my body balance is terrible these days though my head is a little more OPEN :-) looks like one thing gets better other one gets worse.

[tinglebell]

Asif. I have had many of the sx and anxieties that you describe. One thing I can say is that I never realized how much better I felt/was until my level dropped down again. I had severe lower back discomfort and could barely go up an incline at my worst. I also thought right away that I would heal and be back at work very quickly. It has been 21 months now since I began treatment with B12. I still have numbness hands and feet, but I am used to it pretty much, and low back discomfort with any bending. My attention span/distraction is still bothersome. I also had palpatations constantly at first and went to a cardiologist. They were benign premature atrial contactions, and they are still present, but not nearly as frequent. I also had spells where my heart rate would go up to over 140/min. I wonder if that draining feeling you get is a drop in your blood pressure. Have your dr/nurse check your BP lying down and then standing. Have they run an EKG to check out your palpatations? You can wear a 24 hr heart monitor at home (ordered by doc) to check and see what your heart is doing when you get these feelings. My balance is better but I still am very "klutzy". I tend to not pay attention to what I am doing. I guess patience is the key here while the B12 does it's job.

[rose]

Yes, patience is the key. Repairs can be difficult, and changes in symptoms can be sporadic and frightening. Repairs can at times feel like worsening. The key is to keep some notes on a calendar and thus keep track of how things go overall (it's amazing how quickly we forget). It is common for temporary worsening, ups and downs, but an overall improvement.

Always be alert to other possibilities, but look at serious nerve repair in 6 month increments, not day to day or week to week, and not even month to month.

Also, make sure you are getting all of your other nutrients. When the body is repairing it draws extra heavily on some nutrients.

As only one example from my experience: my heart symptoms became extremely alarming prior to improving immensely and disappearing. I was badly damaged, and my heart symptoms worsening was over a period of months. Yes, it was very frightening. So were some of my other temporary worsening of symptoms.

rose

[Cry Tears]

Yes, patience is the key. Repairs can be difficult, and changes in symptoms can be sporadic and frightening. Repairs can at times feel like worsening. The key is to keep some notes on a calendar and thus keep track of how things go overall (it's amazing how quickly we forget). It is common for temporary worsening, ups and downs, but an overall improvement.

Always be alert to other possibilities, but look at serious nerve repair in 6 month increments, not day to day or week to week, and not even month to month.

Also, make sure you are getting all of your other nutrients. When the body is repairing it draws extra heavily on some nutrients.

As only one example from my experience: my heart symptoms became extremely alarming prior to improving immensely and disappearing. I was badly damaged, and my heart symptoms worsening was over a period of months. Yes, it was very frightening. So were some of my other temporary worsening of symptoms.

rose

What Rose has written here is Gods gospel truth!
I too struggle with a damaged body done by long time B12 deficient, spending Thousands of $ on worthless testings...EMG, NC test proved I was ill, was given meds just to mask symptoms...NEVER did they suggest I take B12 and I'm missing several feet of small intestines:eek: ..was told my 232 blood level of B12 was normal? Yeah right...maybe for a lab rat!
I suffered immensly...and I do mean suffered! I nearly died...had spinal cord involvment and 100% bedridden with in home health care just to help me with basic grooming...yes, someone else had to wipe my hiney! I was too fatigued for that! Was passed off as Fibromyalgia...or depression....but why on earth did I literally JUMP out of bed 10 days after supplimenting with sublingual B12 back then if I wasn't B12 deficient?
The repairs have sometimes been frightening and bothersome...often puzzeling. But I take Rose's advice and sure enough...shortly after that weirdo odd ball symptom will disappear.
If I get careless and skip the B12 a few days....then I begin having loss of balance and Neuropathy worsens....then I make sure I take my B12 more faithfully...I'm also allergic to wheat...perhaps gluten sensitive, but I'm in the investigating stage with this...is helping me...a little.
Give me B12 or else!
Oh...those pesky PVC's! I had them for years till I began supplimenting with Magnesium, Potasium and Calcium. I'd been given Inderal L80 3 X day for them for 10+ years!
Then one day listened to radio program by Mayo Clinic cardiologist who said these are usually caused from vit/min deficieny.
I began supplimenting, got off the beta blockers....no longer have PVC's unless I forget to supliment a couple months.
I had them Bi-jimmany....3 in row...often took my breath away and I couldn't even stand up or walk.
If only I'd known it was a vit/min defiency back then...they bothered me for years and I saw numerous cardiologist back then, was just given Beta-Blockers and Valium, many hospital stays too! What a joke...all I needed was a cheep mineral and not those thousands of dollars of worthless pills!
I know how you feel with suffering...is very hard to deal with...but there's better days ahead...just hang in there!
Blessings, cheryl

[asif139]

Thank you guys for your comforting. Its is of real value to me. I pray that we are all back to full health very quickly.