Muscle weakness from b12 therapy?
 

thank you to all once again for this very helpful information! I was diagnosed about 6 weeks ago with PN caused by taking an antacid daily for over 10 years and Metformin over the past 18 months. I have had numbness in feet for quite a while, but when I started stumbling and tripping I took notice.

None of the docs diagnosed a b12 deficiency because serum b12 is normal; however, sudden onset of trembling throughout my body, jerking and twitching muscles every time I would stop moving led me to think it may be B12.

I have had 7 k1000 mg doses of the "cyan" type of B12 and 5 1000 mg doses of the "methyl" type (we FINALLY found a local source!). I am also taking 900 mg's of Neurontin daily to control symptoms.

My question is: My muscles are extremely weak and now my doc is suspecting MS. Is profound weakness a side effect of high dose b12 therapy?

When you start B12, because of being low, the B12 is prioritized by some body mechanism to be sent to critical areas..one of which is the bone marrow.

Here it gets everything going to replace the blood cells the marrow makes. Each cell gets some B12 also, along with increased use of potassium.

If you are low in potassium to start with, or marginal, you can get extreme fatigue and weak feelings. So eating high potassium foods may help this. You can get tested as well, but potassium often shows normal or high when it is not. This is due to the lab mishandling the sample ...which involves bursting the cells and dumping the potassium into the serum. If you show a real LOW that is probably accurate. But some normals and highs may be factiticious (falsely elevated).

This fatigue will go away as you use the B12 to normalize the bone marrow cell factory.

It takes time to fix low B12. The liver, will grab some of each dose for storage, and some will go into the spinal fluid and to the brain. These 3 sites have a high affinity once the B12 therapy is started. It took you months and years to get where you are now, so be patient as your body restores itself and stores some B12 for the future.

Some people find that weak muscles may also respond to some Acetyl Carnitine. This improves mitochondrial functions which we feel as "energy" and strength. Start low at 500mg a day and you may increase if you think you need to, by 500mg a week up to 2000mg a day in divided doses.

Thank you again!
 

Mrs. D - you are absolutely amazing at your knowledge and your willingness to help others. So many of us are scared and confused and getting absolutely no help from doctors who really are very good, but so misinformed on b12!

I will stay the course and take your advice by adding AC. To combat weakness I just bought 5 pounds of bananas!! Will work on increasing potassium and will I will look into taking a supplement as well.

If it helps anyone out there I do think that protein is also very important. I have no appetite but it is easy to hard boil a couple of eggs each day and take them with me to work.

Once again, thank you sincerely. I was down in the dumps but you have lifted me up! If all it takes is patience ... I can definitely stay the course.

New information on B12 and the brain:
 

Here is a link to a new paper explaining that B12 levels were found lower in brains with schizophrenia and autism:

http://psychcentral.com/news/2016/01...ism/98153.html

mrsD, I hadn't read your post here before I sent it off in PM. Sorry about that. :o

Full article here... Totally over my head unfortunately

[Also note limitations with such a small sample size.]

http://journals.plos.org/plosone/art...0146797#sec009

Research Article PLOS ONE
Decreased Brain Levels of Vitamin B12 in Aging, Autism and Schizophrenia
Published: January 22, 2016
DOI: 10.1371/journal.pone.0146797

Hi, I wish I could show this to someone I know. Their son has been diagnosed with Aspergers. Can't bring it up.

I think all diseases and syndromes are caused by heredity and deficiencies in one thing or another. We are meant to have a balanced system. That means not polluting it with processed food and additives. Why are they allowed to be available?. I walk into Dunkin at night to sit with my friends. They are all eating donuts and sugar laden stuff and I just sit there and drink my water. They look at me like I was nuts and I politely say "you know I'm a diabetic and I can't go near any of this'. They all say the same thing 'but can't you cheat once in a while'? I say "Sure, but why would I want to?" They don't get it. I didn't get it when I was young either but I certainly do now.

Why are we bombarded with sugar laden food, sodas, other bad things, tobacco etc. when the known result will be illnesses and diseases? Why? Just so the phamaceutical companies can have a field day with us?

My goodness. I'm just thankful I still grow my sprouts and microgreens. I made a dish tonight that was amazing (without any added sodium). I took bok choy, my pea shoots, my fenugreek, my other microgreens, some onions and garlic, added some orange ginger crystals I get from True Lemon.com and then I did a stir fry (with no salt). Added curry. OMG to die for. I have no idea how but i'll try and upload a photo to this site.

Melody

P.S. I just uploaded the photo of what I cooked tonight. I made it my album cover. The colors of this dish were amazing.

Need urgent help on Alcohol withdrawal symptoms along with B12 and Vit D deficiency
 

deepak2016,

I copied your post to the main PN forum area, here is the link to it -
http://neurotalk.psychcentral.com/thread232413.html

Chris Kresser on B12 and B12 induced neuropathy
 

This may be useful:

http://chriskresser.com/what-causes-...w-to-treat-it/

Mrs D,

How does my B12 look?

Thanks so much

VIT B12 BINDING CAPACITY, UNSAT (TRANSCOBALAMIN)
601 L Range 650-1340 (pg/mL)

VITAMIN B12
1189 H Range 200-1100 (pg/mL)

METHYLMALONIC ACID, GC/MS/MS
110 Range 87-318 (nmol/L)

Did you stop your B12 supplement a few days before the test?

Or were these numbers reported before you started any supplementation?

Your B12 is high in any case...the meaning of it depends on the two questions I've asked.

I had not been on any B12 supplements in several weeks. My B6 was also high. I was using melatonin with B6 in it, which I have discontinued.

My B12 back in November was 907 without supplementation.

Kay

Thanks for that clarification.... It could be you were really high,
and slowly came down to that figure revealed in the test.

Or it could be that you have a medical condition that creates a high B12, or you are eating fortified foods.

Some medical problems present with initially high B12.
Kidney disease
some cancers
liver problems
GI bacterial overgrowth

The transcobalamin is a bit low, and can reflect that it is being used up by the excess B12. Or that can be a genetic flaw. Transcobalamin takes the B12 that crosses the GI lining and carries it into the blood stream and around the body.

The MMA shows low and that is good because B12 is used to lower it in the body (it is a metabolic waste product).

Thank you for the response. I had thought it was ok to supplement even though my level was 907 without supplementing. I was under the impression that higher B12 was good for neuropathy. I will not start the supps again.

Thanks again,

Kay

Hello, everyone.

I found this thread a few days ago and I have read the ENTIRE thing. I haven't understood some of it (haha) but I have read it and I'm so grateful for it being here. I registered specifically to share my background and ask some questions.

I am 31, male, with a history of Peripheral Neuropathy, Pernicious Anemia, lifelong vegetarianism, and a Traumatic Brain Injury (TBI).

Vitamin B12 is relevant to all of these conditions. I had my B12 checked about six months ago and it was in the low 100s. It probably has been for at least 20 years, in retrospect.

My neurologist told me start taking B12, and I did so half-heartedly because I didn't realize the importance of it. Then I got to reading and realized some of my symptoms could be related to this.

I am currently prescribed Concerta (methylphenidate) for my brain injury, and I'm wondering if this interacts in any way with B12?

The reason I ask is that prior to taking 10,000mcg methylcobalamin sublingual for a few days I used to have VERY SEVERE "drops" in energy/attention/function-ability about 3:00pm every day and I assumed it was related to "coming down from" the Concerta.

Since taking tons of B12 the past few days the drops have been noticeably less severe and smoother. I can think clearly longer into the day than I have for years (since the brain injury which left me unconscious).

After reading this thread I now wonder if my "drop" might actually be related to the levels of cortisol or B12? I'm not 100% sure how that works, so if my question sounds stupid, please just overlook me.

I'm still "fleshing out" all the information contained here, and I really REALLY appreciate it!

If you were that low, then you may have a substantial anemia too. When your body replenishes B12 in the tissues, the bone marrow takes alot to make red blood cells...and these take potassium also out of the blood.

So some people become low in potassium... Eat potassium rich foods, and perhaps get tested at the doctor's..to see if you are low. Then your doctor can give you an RX for a potassium supplement. He would determine your dose based on the blood work.

Thank you. I'm going back in 10 days so I will ask him about potassium. To be honest I can't remember if it was already tested and if so what level it was at.

Because of my Pernicious Anemia, do I have to worry about potassium not being absorbed as well, or is that only for B-12?

How long would it take to replenish my B12 to adequate levels? I know it's all variable and guesswork but I mean is it closer to 2 days, 2 weeks, 2 years?

I will keep taking the B12 in high doses because I can feel it working but I'm just curious how long it could potentially take.

Can somebody explain to me how potassium, sodium, and iron interact with B12? I've read many of these responses but either I'm dumb (very possible) or I haven't read it correctly.

I know that once you start taking B12 you have to have your potassium checked and that potassium somehow interferes (right?) with iron and sodium.

But I don't know what that means. Should I eat MORE potassium when I'm taking lots of B12? Should I also eat more salt and iron?

Sorry for the questions, I must actually just be dumb...

I explained in the post above.. B12 stimulates the
Bone marrow to make more red blood cells. This uses
Iron and potasium. B12 also goes into those cells.

Eventually you fix this anemia and the iron and potassium
Deficiency pass.

Thank you. For some reason I thought the doctor said anemia is never cured and I'd have to take B12 forever. I can't remember anything! :rolleyes:

Need of dibencozide along with methylB12?
 

MrsD - I was wondering if you could weigh in on the need of dibencozide along with methylcobalamin - both forms oral - for treatment, possibly and likely lifelong, of B12 deficiency. Years ago I took dibencozide off and on along with methylcobalamin, both in their sublingual (tablet) forms, away from food. Over the last couple years, I had just not taken any dibencozide. My health has been failing. I found that old bottle of dibencozide B12 (specifically the Country Life brand, the one that has a bit of folic acid in it), and wow, I feel soooo much better. I did some reading (not a lot), and found an abstract to a January 2015 article in a European Journal stating that methylcobalamin alone is not good enough treatment for B12 replenishment in those with B12 deficiency, because supposedly the body cannot convert methylcobalamin to dibencozide. It can, however, convert hydroxycobalamin and cyanocobalamin to both forms (provided you have a healthy liver and can tolerate cyanoB12). But why bother with those forms if we have methylB12 on the market, and also dibencozide on the market as well. But I always thought that the body converted methylB12 to dibencozide and vice-versa if it needed to. It appears I may be wrong about this, and will need to therefore not only keep taking the methylB12, but take dibencozide B12 in addition. My symptoms have all been nerve and pain related again - weakness, numbness, stooping back, severe back pain, tinglings, foggy thought, moodiness beyond belief. It may be lack of another form of this nutrient all along... which is good news since supplementing dibencozide is not that expensive and is available over-the-counter.

Thank you,
Jason :)

First of all, thank you Mrs D and others who are there to support and help people seeking answers to their sickness. I started following this thread last week, while searching for diagnosis of my symtoms. I hope someone esp Mrs D would be able to help me here.
I am 38 years old female and have most of the symptoms related to Vit B12, but problem is before my blood test, I already started taking 5000 mcg, methylcobalamine and my test showed higher number ( B 12 - 1142), MMA came back normal. Is it possible with 3 days of supplementation, MMA levels come down? or should I rule out it B 12 deficiency at all?
My major symptoms- numbness and tingling (face, arm, hand, legs), fatigue, lightheadedness, heart palpitations with heavy pulse everywhere else, flu like symptoms, sensitivity to cold, feel feverish, headache, my feet are always cold, chronic constipation (thats a life time problem).
My blood test showed - I am pre diabetic, slight low MCH, MCV AND slight high- RDW, ESR- 31MM/HG.
I have always been prone to getting sick all my life, but these symptoms for last 2 months has made me almost disabled. I don't get all the symptoms everyday, some remain for couple of days, and then others take turn, keeping me sick constantly. plz help and suggest. Thanks in advance.

Mrs D,

I recently posted my B12 results. I have since been to my neuro and he wants me to take B12 event though it is high, he said my binding B12 was low and that it why I need to supplement. I had been off B12 for weeks when I tested.

Is it ok to take B12?

Thank so much, very confused for sure.

Kay

VIT B12 BINDING CAPACITY, UNSAT (TRANSCOBALAMIN)
601 L Range 650-1340 (pg/mL)

VITAMIN B12
1189 H Range 200-1100 (pg/mL)

METHYLMALONIC ACID, GC/MS/MS
110 Range 87-318 (nmol/L)

B12 is really easy to tolerate. The only concern it has for high dose is for people with a rare blood condition called polycythemia vera.

If your doctor told you to do this, I'd do it. Just do it with methylcobalamin form. If you suspect a genetic problem, like the MTHFR mutations, then I'd add methylfolate to your supplements.
You can get tested to see if you have this mutation...it is turning out to be fairly common.

Thank you again for your advice. I have do have a double MTHFR mutation. I am currently taking Seeking Health's Active B12 Lozenge With L-5-MTHF.

Thank you again,

Kay

Out of Balance
 

Hi there,
I'd like to thanks Mrs. D and everyone that posts their information here. It is all very helpful. I am a 57 year old male, that is in very good shape. I go to the gym twice a week, steer clear of Micky D's and never smoked. I do take a couple pills for epilepsy which has been fully controlled for 6 years. I was diagnosed with colon cancer in 11/14. I went through radiation and chemo and then had operation in 2/15. I carried a colonoscopy bag for 6 months and then had another operation to have my "plumbing" reconnected. I was very lucky. I was not sick one day or did not lose any hair. I lost 20 pounds though, which is a lot for me because I only weigh 155 to start with.
Ok, my question, I started to notice about 5-6 years ago a slight limp. I thought it was from an accident I had when I was younger and broke my femur and hip. It has slowly gotten worse over the past years. I said something to my Neurologist and he sent me to Washington University in St. Louis,MO and they did all of their tests but could not find a cause for the neuropathy.
I walk flat footed and my balance is shot now. My blood test showed b12 was 286 so I started taking 5000mcg one a day. I eat a bowl of cereal at 6:30am, go to work and then take my pill at 9:30 or 10:00. My feet never burned like some people say. Mine just tingled. I started taking the
b12 at Thanksgiving and now I don't have any tingling and can feel the bottom of my feet again. The one thing that is really strange is that my left calf is very cold. Well, both feet are cold too, but the calf is cold even after coming back from the gym.
It has taken several years for my feet to get in this bad of shape, so I know it will take a while for them to heal themselves.
Gene

Idiopathic PN try B12?
 

I have read through this thread with great interest after having just been diagnosed with idiopathic neuropathy. My neurologist has ruled out many major things and essentially arrived at a diagnosis of IPN. I have had symptoms for a while now, at least a year, tingling and burning feet that came and went but now its a bit more constant on a day to day basis. I also am just noticing it in my hands a bit. I have no idea how I got this but will list a few bits of information including

Hashimotos diagnosed 2012 confirmed via ultrasound in 2015. No antibodies detected though. Been on thyroxine since then 2012. Currently stopping it for six weeks to see where im at on advice from neuro. I was getting some hyper symptoms.

Took norfloxacin antibiotics for diverticulitis about 18months ago. I also get ibs from time to time and have had chronic gatritis on and off.

Im not a diabetic and have generally good health.

The neuro dismissed vitamin b12 as a possible issue. But I'm not so ready to discount it.

Last test it was 449 pmol/L but I had been taking some tablets (not methyl) the week i got bloods taken. Serum folate was 34nmol/L. I'm mildly anaemic in terms of hematocrit and hemoglobin but those numbers bounce around between normal and low. I used to think this was from doing a lot of endurance sports (cycling) but I stopped that because of persistent pudendal nerve pain and still seem to have it a bit.

I have ordered some methyl b12 from the states because its hard to find here in Australia. Havent taken it yet though. Id like to be systematic about things I try when investigating things further but i'd like to hear what others might think of these numbers?

I also run low on serum sodium 135 and on lower side for potassium 3.7. Mag supplements have never really helped me at all.

Putting this all togther, pudendal nerve irritation, plus the peripheral neuropathy I was considering trying the methyl B12 for a few months? Might just be in the denial stage but I'm just not ready to rest on a diagnosis of "idiopathic" and a diet of Lyrica, which leaves me pain free but cognitively impaired...

Thanks
Fred

Welcome to NeuroTalk:
Your Floxin antibiotic is a member of the fluoroquinolone antibiotics, and they are known causers of neuropathy.

Here is a post about it:
http://neurotalk.psychcentral.com/post661103-2.html

As time passes, more and more people show up on the net searching for this topic. Today there are many more sites you can find on Google about the damage fluoroquinolones cause.

Low electrolytes like sodium and potassium do happen with kidney disease. So you need testing to see if they remain low or were just low that one testing time.

The B12 can't hurt, so I would stay on the methyl form for a while. Beginning low B12 does show up in CBC blood testing as a high or borderline high MCV result.

My recent B12 result was:

Vitamin B12 Binding Capacity 151 pg/mL Range: 650 - 1340 pg/mL

I don't know what this means. Never heard of "binding capacity." Been taking Jarrow B12 on an empty stomach. Big doses (1,000-10,000 mcg). My last B12 was nice and high, near 1000 if I recall. Puzzled. Am I all of a sudden not absorbing B12? My doctor is concerned because I am mildly anemic, as follows:

WBC 7.6 Thousand/uL 3.8 - 10.8 Thousand/uL
RBC 3.71 Million/uL 4.20 - 5.80 Million/uL
Hemoglobin 11.9 g/dL 13.2 - 17.1 g/dL
Hematocrit 35.2 % 38.5 - 50.0 %


Not doing too well today because I just had (unrelated) surgery on my arm. I'd be grateful if someone could explain. Thanks.

Do you have the MCV level? Is it high normal or out of range high?

You could get an MMA test and/or homocysteine to see if your
test was accurate. A low MMA and high homocytestine would indicate that your body is not using B12 properly.

Labs do make mistakes.

Since you are looking at a possible low level, and anemia, get a copper level run too. Low copper leads to anemia.

MCV 94.9 fL 80.0 - 100.0 fL
Folate >24.0 ng/mL

My doctor wanted me to come in for a B12 shot, then changed his mind and decided to get a redo on the test first. He keeps sending me to QuestDiagnostics for the blood draw and the tests. I don't like QuestDiagnostics, so I'm thinking of getting a new doctor.

Hi Mrs. D. Got a good one for you.

First, about my visit to a brand new podiatrist (who didn't kill me and my ingrown toenails). My former podiatrist used this drill and drilled into the corners of all my toenails and I jumped out of the chair (the pain was horrible). I screamed and he said "I'm not a spa" This was a dig to me because I used to go to get my feet done at the local nail salon and they always did a super job but my ingrown was bothering me so I went to him. Never went back.

So I had been going to the same person for my ingrowns for 6 months. Every two weeks. She made my feet fantastic, never had a problem.

But.....she quit three weeks ago and I won't let anyone else near me so I went to this new podiatrist.

He was wonderful, said my feet were in great shape for someone with diabetes for 28 years and had been diagnosed with neuropathy 10 years ago. He did his neuropathy test on me "do I feel this sharp or dull", etc. etc. He took my pulse in my ankle....etc. I did just fine. He said I should keep walking and I said 'no problem"

I told him about Alan and his journey with his neuropathy problem and the guy shook his head and said "that's a tough nut to crack".

Then I told him about my use of Methyl B-12 every day and he had this gleam in his eye and this big smile on his face and his exact words were "THAT STUFF IS MAGIC ISN'T IT???"

So I'm on the good road in keeping my neuropathy controlled, thank god for that.

Now here's what I want to run by you. The other night at Dunkin Donuts my friend's 59 year old daughter (beautiful woman, looks half her age, not overweight, holds a job) and we were talking and I mentioned neuropathy and she blurts out 'Oh I have neuropathy?"

I looked at her (I know her for 3 years now, and never knew this)

I said "You have neuropathy? Were you actually diagnosed?" She said "Oh yes, he did the filament test, and all the tests"

I said 'are you diabetic?" She said "no, that's the strange thing, they don't know why I have it, and I only get it in the winter, not the summer and in the winter my toes are completely numb".

I questioned her further and she replied that she does not get the zips and zaps that Alan and others get, it's just that her toes are completely numb when it's cold outside.

Then she further said "I have nodules on the bottom of my feet". I said "Can't the doctor remove them?" She said "He refused and he said "I'm not touching thses, because there are nerved involved and tendons and god forbid I touch the wrong thing........."

She also has psoriasis in various parts of her body (for a long long time). She wears things to cover it up and her doctor puts some kind of cortizone tape on her hands. Never heard of that one. I told her about Alan's acupuncturist and his thoughts on people coming down with these ailments and he thinks that everyone had the Epstein Barr Virus some time ago and that something triggered something in the body and these people came down with various conditions.

She said OMG, that's what my doctor said, he said I got this from shock". I said "what shocked you?" She said "My friend committed suicide'. I just looked at her. I said 'I'm so sorry".

Anyway, just wanted to share what I just found out.

Take care,

Melody

I did a couple of searches in this thread and was not able to find what I am looking for — probably because I am not very good at writing the correct search terms — so I'll ask a question.

I am recently diagnosed with pernicious anemia. With regard to sublingual B12, I'd like to hear what products others are using and how well they are working. I have some Jarrow Methyl B12 1,000 mcg, but I wonder if there is another form (liquid or powder) that would be better than the tablets, which, by the way, take a long time to dissolve under the tongue.

Thanks. :)

Hi Nervous

The information here might help you to ask your health care team informed questions about pernicious anaemia, including treatment options What Is Pernicious Anemia? - NHLBI, NIH.

Already bookmarked that one, but thank you, Kiwi. :)

Sublingual does not work well. Chew them up and swallow
followed with water. Take only on an empty stomach, as food will bind B12's micrograms and prevent absorption.

A study was done with B12, orally for both normal volunteers and those with pernicious anemia and similar absorption occurred in both groups when used on an empty stomach. (no food for an hour after.)
PubMed Central, Table 1: Blood. 28 Sep 15; 112(6): 2214–2221. Prepublished online 28 Jul 7. doi: 1.1182/blood-28-3-4253

The abbreviation on the table is PA = pernicious anemia.

If one is taking B12 orally, you need to follow the protocol, so as to get aborption. If I were you I'd take 5000mcg (5mg) once a day until you improve. You could back down to 1 or 2mg after that if you take it properly. Also don't bother with cyano...use methylcobalamin which is already active in the body.

mrsD, I know that you know what the definition of pernicious anemia is, but, for my own peace of mind, let me include this information: My recent Intrinsic Factor Blocking ab test was positive. If this is the case, then how can I absorb B12 through the digestive tract?

Sorry if this question is too science-y. :)

The way intrinsic factor works is to take the 1 or 2 micrograms broken out of protein from animal sources. It is such a minute amount the intrinsic factor complexes the B12 and holds it so it cannot get lost in the GI tract amongst the food there.

When you take oral supplements there is a huge dose present
(sometimes more that 1000x that of food) so if the food is not present in the GI tract at that time, the B12 is able to passively pass thru the GI membranes and get into the blood.
If transcobalamin is working there, it snaps up the B12 and carries it around in the blood until releasing it in tissues.

It is known now that the mouth membranes are too small to get much B12 into the blood that way; B12 is a huge molecule and chemically can't get thru well that way.

The link to the table I gave you here shows that B12 can orally work and therefore explains it clearly.

Thanks, again, mrsD.

If I understand you correctly, you are implying that I only need intrinsic factor to derive B12 from food. If I take the Jarrow Methyl B12 on an empty stomach, I can absorb the B12 whether or not intrinsic factor is present. Is that right?

yes, that is correct. The huge dose of oral B12 makes up for absence of intrinsic factor. Oral absorption is not all that dose by far, as that table found 13 micrograms were absorbed in that test with 1000mcg dose. So you should take the oral form daily, on an empty stomach.

B12 Test Results

5/31/16: 151 pg/mL (Standard Range: 650-1340)

8/4/16: 1781 pg/mL (Standard Range: 211-911)


From 6/21/16 to now, my doctor has been giving me 1000mcg B12 injections every other week. In addition, I have been taking B12 orally (even though my doctor says that I cannot absorb it due to no intrinsic factor).

Question 1: How much is enough?

Question 2: How much is too much?

Doctor says I will have to be on B12 injections for the rest of my life. If so, I'm going to learn how to inject myself. People do this, right?

Thanks, all. :)