Vitamin B12 deficiency and small fiber neuropathy

Posted by mikeg0822 @mikeg0822, Sep 23, 2022

Hi everybody,
I was hoping to possibly connect or receive advice. Has anybody been diagnosed with small fiber neuropathy caused by a vitamin B12 deficiency? I'm 28 years old and have always been healthy otherwise. I've never smoked, always maintained my fitness level, and have always had a relatively healthy diet. My B12 deficiency went unnoticed for 13 months, and I finally began getting treated for it about eight months ago. Doctors are hopeful I can recover but aren't sure. Does anybody have any experience with this? Any advice would be welcome. Thank you!

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@runnergirl

Hi, @mikeg0822 - I've had autonomic neuropathy symptoms since early 2007, officially diagnosed in 2016 (yes, it took that long). I was also diagnosed with low vitamin B around the same time in 2016 (yes, the docs missed this one too). I've also had low copper, diagnosed in 2013, which can cause neuropathy. I have so many GI issues that I don't absorb enough vitamin B, so I've been on injections for a few years. The levels are still low. I'm currently being treated and monitored - still on injections and oral supplementation, but not certain if they're being absorbed and cells are utilizing them - this is the big question. I have a good diet and am athletic. (Was a competitive runner up until this wretched disease took over.) I'm hoping that once my levels of both B and copper are back to normal and sustained that my symptoms resolve. This would be a dream come true. But, it might have been too long to be able to turn everything around. With you being young and catching this soon, you might have better results.

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How do you treat a copper deficiency?

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I have been experiencing neuropathy-like symptoms for almost 6 months, although my EMG and physical exams show no significant nerve damage. After numerous tests they determined my B-12 was 315 (low). It has increased to over 800 with supplements. My neurologist said it can take 6-12 months for symptoms to improve. I have been following the B-12 Society (based in the UK) on Facebook. They are insistent that if you have neurological symptoms you need B-12 injections to get the vitamin into your cells. They feel that with oral supplements Vitamin B-12 only sits in the bloodstream and doesn't truly heal the body. My neurologist disagrees and actually told me to go off B-12 since my numbers have dramatically increased (I still take B complex and a multi-vitamin). I am so confused and feel there are no clear answers when it comes to B-12 deficiency. Magnesium glycinate has been a godsend for me to get restful sleep at night. Best wishes to you for a full recovery.

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@madison2023

I have been experiencing neuropathy-like symptoms for almost 6 months, although my EMG and physical exams show no significant nerve damage. After numerous tests they determined my B-12 was 315 (low). It has increased to over 800 with supplements. My neurologist said it can take 6-12 months for symptoms to improve. I have been following the B-12 Society (based in the UK) on Facebook. They are insistent that if you have neurological symptoms you need B-12 injections to get the vitamin into your cells. They feel that with oral supplements Vitamin B-12 only sits in the bloodstream and doesn't truly heal the body. My neurologist disagrees and actually told me to go off B-12 since my numbers have dramatically increased (I still take B complex and a multi-vitamin). I am so confused and feel there are no clear answers when it comes to B-12 deficiency. Magnesium glycinate has been a godsend for me to get restful sleep at night. Best wishes to you for a full recovery.

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How much b6 are you taking in b complex and multivitamin? Have you tested b6 to make sure it's not too high. Excess b6 can cause neuropathy

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@xian121905

Very! Ever time I try and research something I find that symptoms that are the usual don’t match mine. My mom and sis have the same symptoms except mom has burning and sis does not. Mine just feels like buzzing and sometimes it feels like a pulsating sensation.

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@xian121905 why don’t you try going back on the vitamin regime? Do not expect to compare your symptoms to your families or those on web as you are an individual like all of us. Not unusual unfortunately that you have the same diagnosis as your sister and mom. I hope the treatments work for you and don’t become discouraged in seeking answers and solutions.

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B12 and neuropathy & bloodwork
Hello. Looking for answers. Any advice would be appreciated. Events: July 26 2023 out of no where I began to get full body tingling, pin & needles, burning sensation with sporadic itch. My skin felt I was sunburned. Sleeping my back felt as if I was lying on sandpaper. Not real severe, but scary. July 27 my ankles were aching & my front of my calves. July 28 went to ER. At this time I was on antibiotic Cefpodoxime proxetil for UTI. Hospital ran labs. They said all looked good. No explanation why my skin was feeling this. It's now been over a month. Symptoms progressed. Went back to ER onn August 24, there ran many labs. The said I have PN and prescribed Gabapentin. I reviewed my labs on My Chart with a fine tooth comb. These are my concerns: My MCHC is above normal range at 37. The normal range is 32-36. My trends are as follows starting from August 24 to June 3: 37, 36, 37, 36, 36. I researched high MCHC (UWH) and it says: High MCH scores are commonly a sign of macrocytic anemia. This condition occurs when the blood cells are too big, which can be a result of not having enough vitamin B12 or folic acid in the body. Although they did a B12 test is was "Borderline", mine was 268. The normal range is 213-816. I am 55 digits to be considered B12 deficient. I have only 2 trends, August 24 at 268 and Sept. 13 2021 at 330. With the information I provided,could I be experiencing neuropathy symptoms from B12 deficiency.

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@sallylynn

B12 and neuropathy & bloodwork
Hello. Looking for answers. Any advice would be appreciated. Events: July 26 2023 out of no where I began to get full body tingling, pin & needles, burning sensation with sporadic itch. My skin felt I was sunburned. Sleeping my back felt as if I was lying on sandpaper. Not real severe, but scary. July 27 my ankles were aching & my front of my calves. July 28 went to ER. At this time I was on antibiotic Cefpodoxime proxetil for UTI. Hospital ran labs. They said all looked good. No explanation why my skin was feeling this. It's now been over a month. Symptoms progressed. Went back to ER onn August 24, there ran many labs. The said I have PN and prescribed Gabapentin. I reviewed my labs on My Chart with a fine tooth comb. These are my concerns: My MCHC is above normal range at 37. The normal range is 32-36. My trends are as follows starting from August 24 to June 3: 37, 36, 37, 36, 36. I researched high MCHC (UWH) and it says: High MCH scores are commonly a sign of macrocytic anemia. This condition occurs when the blood cells are too big, which can be a result of not having enough vitamin B12 or folic acid in the body. Although they did a B12 test is was "Borderline", mine was 268. The normal range is 213-816. I am 55 digits to be considered B12 deficient. I have only 2 trends, August 24 at 268 and Sept. 13 2021 at 330. With the information I provided,could I be experiencing neuropathy symptoms from B12 deficiency.

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I have concerns myself about B12. As a teen, I used to get weekly B12 shots that counteracted my extreme tiredness. Now docs refuse to give shots and I take a 1000 mcg B12 pill each day. I’m still exhausted everyday. Doctors should listen to us more because we’re in the body with the problems!

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@sallylynn

B12 and neuropathy & bloodwork
Hello. Looking for answers. Any advice would be appreciated. Events: July 26 2023 out of no where I began to get full body tingling, pin & needles, burning sensation with sporadic itch. My skin felt I was sunburned. Sleeping my back felt as if I was lying on sandpaper. Not real severe, but scary. July 27 my ankles were aching & my front of my calves. July 28 went to ER. At this time I was on antibiotic Cefpodoxime proxetil for UTI. Hospital ran labs. They said all looked good. No explanation why my skin was feeling this. It's now been over a month. Symptoms progressed. Went back to ER onn August 24, there ran many labs. The said I have PN and prescribed Gabapentin. I reviewed my labs on My Chart with a fine tooth comb. These are my concerns: My MCHC is above normal range at 37. The normal range is 32-36. My trends are as follows starting from August 24 to June 3: 37, 36, 37, 36, 36. I researched high MCHC (UWH) and it says: High MCH scores are commonly a sign of macrocytic anemia. This condition occurs when the blood cells are too big, which can be a result of not having enough vitamin B12 or folic acid in the body. Although they did a B12 test is was "Borderline", mine was 268. The normal range is 213-816. I am 55 digits to be considered B12 deficient. I have only 2 trends, August 24 at 268 and Sept. 13 2021 at 330. With the information I provided,could I be experiencing neuropathy symptoms from B12 deficiency.

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Hello @sallylynn. I noticed your topic and wanted to get you into an existing discussion with others, so you will see I have moved your post here:
- B12 and neuropathy & bloodwork: https://connect.mayoclinic.org/discussion/vitamin-b12-deficiency-and-small-fiber-neuropathy/

Out of curiosity, have you started taking B12 at the advise of your neurologist once you discovered the deficiency?

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@sallylynn

B12 and neuropathy & bloodwork
Hello. Looking for answers. Any advice would be appreciated. Events: July 26 2023 out of no where I began to get full body tingling, pin & needles, burning sensation with sporadic itch. My skin felt I was sunburned. Sleeping my back felt as if I was lying on sandpaper. Not real severe, but scary. July 27 my ankles were aching & my front of my calves. July 28 went to ER. At this time I was on antibiotic Cefpodoxime proxetil for UTI. Hospital ran labs. They said all looked good. No explanation why my skin was feeling this. It's now been over a month. Symptoms progressed. Went back to ER onn August 24, there ran many labs. The said I have PN and prescribed Gabapentin. I reviewed my labs on My Chart with a fine tooth comb. These are my concerns: My MCHC is above normal range at 37. The normal range is 32-36. My trends are as follows starting from August 24 to June 3: 37, 36, 37, 36, 36. I researched high MCHC (UWH) and it says: High MCH scores are commonly a sign of macrocytic anemia. This condition occurs when the blood cells are too big, which can be a result of not having enough vitamin B12 or folic acid in the body. Although they did a B12 test is was "Borderline", mine was 268. The normal range is 213-816. I am 55 digits to be considered B12 deficient. I have only 2 trends, August 24 at 268 and Sept. 13 2021 at 330. With the information I provided,could I be experiencing neuropathy symptoms from B12 deficiency.

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@sallylynn

Did you start experiencing these symptoms after you started the antibiotics?

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@bonniethompson1234

I have concerns myself about B12. As a teen, I used to get weekly B12 shots that counteracted my extreme tiredness. Now docs refuse to give shots and I take a 1000 mcg B12 pill each day. I’m still exhausted everyday. Doctors should listen to us more because we’re in the body with the problems!

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Try using sublingual B12 and/or sublingual B complex can be purchased at CVS, to see if it makes a difference. Also, have your thyroid levels checked. Check your MMA levels along with RBC and serum folic acid levels. You can have these done without a doctors order at a facility called Any Lab Test.

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@bonniethompson1234

I have concerns myself about B12. As a teen, I used to get weekly B12 shots that counteracted my extreme tiredness. Now docs refuse to give shots and I take a 1000 mcg B12 pill each day. I’m still exhausted everyday. Doctors should listen to us more because we’re in the body with the problems!

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If you have any of the IV infusion sites where you live, you can usually get a B12 shot there. They advertise to athletes and for hangover cure mostly

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