How did you get help with Vitamin B12 Deficiency Recovery?

Posted by dansweeney @dansweeney, Sep 12 4:12pm

In December of 2021 after a hospital stay I found out I had a Vit. B12 deficiency.
I started getting B12 injections that month till May of 2022.
I'm having a hard recovery and I can't find anyone that understands B12 deficiency's that can help me or explain what is wrong with my legs muscles. My legs are weak and after I move around even for a short walk the muscles burn.
Does anyone know what type Doctor I should be seeing to help recovery?
I currently go to Guthrie hospital in Sayre, Pa. and have a P.A. at Guthrie clinic in Dushore Pa. as my family doctor.
Thank you for your time ! Dan

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Hello @dansweeney, Welcome to Connect. You mention that your leg muscles burn even after a short walk which I think can be a symptom of nerve damage from Vitamin B12 deficiency. Here's some information on the topic:

" Trouble walking. Over time, peripheral nerve damage resulting from vitamin B-12 deficiency can lead to movement problems. Numbness in the feet and limbs may make it hard for a person to walk without support. They may also experience muscle weakness and diminished reflexes."
— 11 symptoms of vitamin B-12 deficiency:
https://www.medicalnewstoday.com/articles/324265
A neurologist normally diagnoses nerve damage. Do any of these symptoms similar to the ones you are having?

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@dansweeney

As @johnbishop said, muscle weakness is one of the several side effects of B12 deficiency. I don’t know what medications you take,
if any , your age or your diet , but I would first get your Doctor or PA to order another blood panel that includes B12 and then go from there before you seek another type of Doctor on your own. I have know one person in the past who had to get B12 injections periodically for the rest of his life. I don’t remember his symptoms except for extreme fatigue but there may have been more.

FL Mary

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I have the opposite….double B12 of what I should have. Alternative medicine doc? Nutritionist? Double up on B12

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@imallears

@dansweeney

As @johnbishop said, muscle weakness is one of the several side effects of B12 deficiency. I don’t know what medications you take,
if any , your age or your diet , but I would first get your Doctor or PA to order another blood panel that includes B12 and then go from there before you seek another type of Doctor on your own. I have know one person in the past who had to get B12 injections periodically for the rest of his life. I don’t remember his symptoms except for extreme fatigue but there may have been more.

FL Mary

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In Aug. Of 2021 I had a neck operation and during my hospital stay they gave me "Pantoprazole " they said I had a bleeding ulcer. I started have muscle and nerve pain in my arms and legs. Hospital said I needed to see a neurologist. December was the first opening I could get.
They did blood work and found my B12 was at 218. In August when I had the operation it was 875.
If you read up Pantoprazole it blocks B12 from getting in your system. I did B12
injections from December of 21 to May of 22.
My level is stable now.
I'm still recovering.

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@johnbishop

Hello @dansweeney, Welcome to Connect. You mention that your leg muscles burn even after a short walk which I think can be a symptom of nerve damage from Vitamin B12 deficiency. Here's some information on the topic:

" Trouble walking. Over time, peripheral nerve damage resulting from vitamin B-12 deficiency can lead to movement problems. Numbness in the feet and limbs may make it hard for a person to walk without support. They may also experience muscle weakness and diminished reflexes."
— 11 symptoms of vitamin B-12 deficiency:
https://www.medicalnewstoday.com/articles/324265
A neurologist normally diagnoses nerve damage. Do any of these symptoms similar to the ones you are having?

Jump to this post

All of them do ! It seems like no one has been trained up here at Guthrie hospital to help me understand if I will heal or what I should be doing about the muscle and nerve pain/weakness.
I doing go through the B12 injections for 6 months and my levels look good now.

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@dansweeney

All of them do ! It seems like no one has been trained up here at Guthrie hospital to help me understand if I will heal or what I should be doing about the muscle and nerve pain/weakness.
I doing go through the B12 injections for 6 months and my levels look good now.

Jump to this post

Wondering if you have seen this article that discusses other vitamin deficiencies that can cause similar problems:
— Vitamin Deficiency and Leg Pain:
https://www.livestrong.com/article/408808-vitamin-deficiency-leg-pain/
Have you considered trying to get a second opinion if the doctors can't seem to help you there?

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@johnbishop

Wondering if you have seen this article that discusses other vitamin deficiencies that can cause similar problems:
— Vitamin Deficiency and Leg Pain:
https://www.livestrong.com/article/408808-vitamin-deficiency-leg-pain/
Have you considered trying to get a second opinion if the doctors can't seem to help you there?

Jump to this post

That's the reason I joined this group !
It seems like no one cares about the end point to my issues.
I think this all started after Guthrie gave me
" Pantoprazole " for my stomach ulcer but they deny it even though if you look it up Mayo clinic says it can block B12 from getting in your system.

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Hey so I had low b12 and somewhat low iron. They thought it was causing my symptoms (all over body pins and needles, internal tremors and muscle spasms).
So I took high doses of b12 twice daily, and also took a multi vitamin in case I was deficient in other things.
And I felt like my pins and needles were getting better. At least I was able to sleep at night and some nights the pins and needles were very mild. But I still had mild internal tremors/ vibrations.

Not long after my symptoms changed and I experienced fatigue and weakness along with internal tremors /shaking but my pins and needles remained mild.
New bloodwork revealed my b12 was now very high and my iron was now on the low end of an optimal range.

So i started taking iron (which I thought was responsible for alleviating my weakness the first two days, but it could have been something else that I was doing too for example I also started electrolytes and just eating a well balanced meal with the iron and it seemed to stop my abnormal fatigue and weakness). But each morning I’d again wake up weak.

And I stopped taking high doses of b12 because my blood work read high in it, and just took the multivitamin instead, but the same night my pins and needles came back worse.

And my doctors are no help. So I guess I’m just wondering is the fact my b12 is now high from taking high doses every day mean that my liver has finally absorbed enough? Should I assume I’m no longer deficient in it??? Or could the b12 vitamins I took that day just been in my blood without actually storing in my liver, and thus making the high reading in the blood test not accurate ?
And since my vitamin b12 blood levels are high now, i should assume I’m absorbing vitamins just fine???
And if it’s high should I still take high dose of b12?
Because I thought I could stop yet my symptoms came back fast. Is maybe my body depleting my vitamin stores really fast or something?

I’m not even sure if vitamin deficiency is causing my symptoms maybe it was just a coincidence my symptoms seemed to get better when I started taking them.
But my doctors have never explained to me how this works.
They told me to take high doses of b12 for a month. Yet it’s been less than that and it’s reading high.

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@thunderseed

Hey so I had low b12 and somewhat low iron. They thought it was causing my symptoms (all over body pins and needles, internal tremors and muscle spasms).
So I took high doses of b12 twice daily, and also took a multi vitamin in case I was deficient in other things.
And I felt like my pins and needles were getting better. At least I was able to sleep at night and some nights the pins and needles were very mild. But I still had mild internal tremors/ vibrations.

Not long after my symptoms changed and I experienced fatigue and weakness along with internal tremors /shaking but my pins and needles remained mild.
New bloodwork revealed my b12 was now very high and my iron was now on the low end of an optimal range.

So i started taking iron (which I thought was responsible for alleviating my weakness the first two days, but it could have been something else that I was doing too for example I also started electrolytes and just eating a well balanced meal with the iron and it seemed to stop my abnormal fatigue and weakness). But each morning I’d again wake up weak.

And I stopped taking high doses of b12 because my blood work read high in it, and just took the multivitamin instead, but the same night my pins and needles came back worse.

And my doctors are no help. So I guess I’m just wondering is the fact my b12 is now high from taking high doses every day mean that my liver has finally absorbed enough? Should I assume I’m no longer deficient in it??? Or could the b12 vitamins I took that day just been in my blood without actually storing in my liver, and thus making the high reading in the blood test not accurate ?
And since my vitamin b12 blood levels are high now, i should assume I’m absorbing vitamins just fine???
And if it’s high should I still take high dose of b12?
Because I thought I could stop yet my symptoms came back fast. Is maybe my body depleting my vitamin stores really fast or something?

I’m not even sure if vitamin deficiency is causing my symptoms maybe it was just a coincidence my symptoms seemed to get better when I started taking them.
But my doctors have never explained to me how this works.
They told me to take high doses of b12 for a month. Yet it’s been less than that and it’s reading high.

Jump to this post

Hi @thunderseed, your posts fits well with this existing discussion where you can connect with other members dealing with vitamin B12 deficiency.
– How did you get help with Vitamin B12 Deficiency Recovery? https://connect.mayoclinic.org/discussion/vit-b12-deficiency-recovery/

You might also be interested in this related discussion since you mention pins and needles:
– Vitamin B12 deficiency and small fiber neuropathy Vitamin B12 deficiency and small fiber neuropathy

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