Having scary symptoms, could it be B12/Folate deficiency?

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Having scary symptoms, could it be B12/Folate deficiency?

Postby Provenance » Sun Jun 17, 2018 4:26 pm

Hi everybody,

I am new to the forum but have been coming here for some weeks to read posts, hoping to find an answer to my health problems. I finally decided to register and ask for help. I know that nobody can diagnose me with MS or any other disease through an online thread but I am hoping others with experience/knowledge can shed some light on my symptoms.

First, I would like to introduced myself. I am a 41 years old male from a middle eastern origin. I have been living in Norway for most of my adult life. My symptoms started about 7 years ago (I remember the exact moment), I was going through some stressful time and I got some strange buzzing (pins and needles) and pressure sensations across the bridge of my nose, around my eyes and in the back of my neck. I thought it was just stress and that the symptoms would go away when my stressful situation ended. couple of weeks later, I went on holiday, and while I was having dinner, I start to get dizzy and felt like I was going to faint. I started to panic and I went to my hotel room and laid down, that is when I started to experience pins and needles in my feet and calves. These symptoms intensified when I smoked and after food (I have been a non-smoker for 5 years now). I also started to feel fatigue after physical activity and started to develop some vision problems. when I look at busy patterns (especially vertical or horizontal lines that are close together), the edges would appear to be vibrating. Very similar to these optical illusion images that appear to vibrate. I went to my primary care doctor who ran some blood tests and ordered a head MRI (no contrast) and ECG. Everything came back fine. I was told that it was stress and/or psychosomatic symptoms.Then I developed some bladder symptoms, I feel like I need to urinate often, sometimes with very little output. This intensified when I lay down before I go to sleep.

I carried on for 3 more years trying to live with the fatigue, paresthesia and other symptoms until I got fed up and decided to go back to the doctor and ask for referral to a neurologist, thinking it could be peripheral neuropathy. The neurologist examined me (briefly) and ordered nerve condition study (NCS) and an electromyogram (EMG). Both tests came back negative. I was told that they couldn't find any cause to my problem. I kept living with my symptoms which were not progressing until about 6 months ago. I was again going through some stressful time with work/school. I was finishing a PhD and I had to write my thesis in short time due to lack of funding. I was sitting for 10 to 15 hours a day in front of my computer for about 3 months. After, I submitted my thesis, I started to notice that my muscle ached when I got up in the morning. I felt like I was lifting weights the day before which I wasn't. In addition, I started to get extremely fatigued after walking for less than 10 min. This fatigue is something that I have never experienced before, it wasn't tiredness. It is the kind of muscle fatigue that happens when you left your arm above your head for a long time, you can't continue anymore due to muscle exhaustion. I also started to have ectopic heart beats (extra beats) at the same time.

Currently almost every muscle in my body gets fatigued so easily, my arms feel heavy when lifting light objects such as a cup of coffee, my back and chest get tired when I walk or sit down upright for a short period of time (I first thought that I had heart-related chest pain, but got an exercise ECG which ruled that out). Now, I am literally hitting the wall, physically and emotionally. I have panic attacks on a daily basis and I can't manage to carry out my duties at work. That is when I started to think that this might be MS. I don't think it is relapsing remitting MS (since I don't recall having a distinct relapse and my symptoms never improve, I do think it is primary progressive. I went back to the primary care doctor and told him that I can't cope anymore and I think I might have MS. My doctor almost laughed at me since my chances of having MS is very low due to my ethnicity and gender. However, I convinced him to run every blood test he can think of and refer me to neurologist. All my tests came back fine except for low folate. My serum folate level is 8 nmol/L or 3.5 ng/ml. B12 is 309 pmol/L or 417 pg/ml. According to the results my B12 levels are fine but I am getting a bit confused when searching online and reading some of the posts on here which suggest that levels under 500 pg/ml is low. He also ran anaemia test which came back fine. Do you think, that I have B12 deficiency? can low folate cause these symptoms without having anaemia? could this be MS? I am going back to my doctor in 3 days to discuss the blood tests and I don't know if I should push him into giving B12 and folate injections while waiting for the neurologist appointment which might take months (healthcare in Norway is for free but seeing a specialist especially a neurologist can take time)

I know that my post is extremely long and I understand if nobody reads it. I guess, it feels a bit better by putting all my thoughts, fears, and pain in writing. I know that a lot of people here are experiencing pain and suffering on a daily basis due to this horrendous disease. you are all in my thoughts. Thank you for reading.
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Re: Having scary symptoms, could it be B12/Folate deficiency

Postby NHE » Mon Jun 18, 2018 2:36 am

Provenance wrote:He also ran anaemia test which came back fine.

Anemia is a late sign of B12 deficiency. Neurological symptoms precede hematological effects. If you wish to pursue B12 testing, then you might consider tests of holotranscobalamin and unsaturated B12 binding capacity. By the way, did you get methylmalonic acid (MMA) tested? Also, what were your results for mean corpuscular volume (MCV)? It can be elevated in B12 deficiency before signs of anemia develop, but still test in the "normal" range.
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Re: Having scary symptoms, could it be B12/Folate deficiency

Postby ElliotB » Mon Jun 18, 2018 4:20 am

Sorry to hear you are ill. It is possible the root cause of your issues is a nutritional deficiency but it is also possible it is something else. Sounds like you have convinced yourself and diagnosed yourself to have MS. Keep in mind that there are about 400 illnesses that mimic the symptoms of MS. So let the doctors do their job and figure out exactly what is going on.

In the meantime, do the best you can to improve your general health through diet, lots of exercise, nutritional supplements, sufficient sleep and elimination of all stresses from your life. If you smoke, drink or do drugs, give these up. These steps could have a dramatic positive effect on you.

Hope you feel better soon.
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Re: Having scary symptoms, could it be B12/Folate deficiency

Postby jimmylegs » Mon Jun 18, 2018 6:15 am

hi and welcome :) congrats on your thesis. topic??

re your note
"I went to my primary care doctor who ran some blood tests and ordered a head MRI (no contrast) and ECG. Everything came back fine. I was told that it was stress and/or psychosomatic symptoms."

so frustrating. they say that when they are a) failing to run appropriate tests and/or b) failing to interpret results using available evidence, using flawed reference ranges to determine sufficiency

re your results. re nutrients, which do you have besides folate and b12 if any? i never feel good when people zero in on one or a couple of nutrients in the context of such a complex and multifactorial system as a human operating in a modern environment!

if you have not already had the opportunity, i invite you to read some of the following user's experience and change over the last year and a half or so (another male of middle eastern origins btw). i'm dropping you into a lengthy topic at an early review of this user's set of nutrient related lab results. you may find that and following posts of interest

introductions-f20/topic28969.html#p247337

the thread is a long and winding road that i think would benefit from a synthesis exercise if you're in the market for some homework ;)

again welcome and happy reading - i will look forward to more nutient-related lab results from you, if available.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Having scary symptoms, could it be B12/Folate deficiency

Postby Zyklon » Mon Jun 18, 2018 9:52 am

Welcome.

while I was having dinner, I start to get dizzy and felt like I was going to faint. I started to panic and I went to my hotel room and laid down, that is when I started to experience pins and needles in my feet and calves. These symptoms intensified when I smoked and after food


Do you have any blood sugar tests? Please tell us more about your diet.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
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Re: Having scary symptoms, could it be B12/Folate deficiency

Postby jimmylegs » Mon Jun 18, 2018 10:16 am

ah, speak of the devil ;)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Having scary symptoms, could it be B12/Folate deficiency

Postby Provenance » Mon Jun 18, 2018 12:46 pm

Hi Everyone, first I want to thank you all for taking the time to read and answer my LONG post. I really appreciate it :smile:

I will try to answer the questions/comments that you asked.

NHE : Unfortunately, I was only tested for B12 and Folate. I will ask my doctor on Wednesday to test for MMA, holotranscobalamin and unsaturated B12 binding capacity as you suggested. Here is my anaemia results, HB: 14,3 g/dl, MCV: 87 FL, MCH: 29,2 PG and thrombocytes : 216 x 10^9/L. I am not sure if the units are similar where you are. According to the lab report, all of the above levels are within normal range.

ElliotB: Thank you very much for reminding me to keep calm, I need it. Unfortunately, I tend to worry and become impatient with things. I also need to do some changes to my life style. I stoped working out due to the muscle issues and I am progressively isolating myself from friends and family. I think I am starting to become a bit depressed. However, I am aware of the situation and I will try to implement small changes to get my life back and not just wait for a diagnosis. The good thing is that I don't smoke, drink very little (a glass or two of wine a month) and I don't do drugs.

jimmylegs: Thank you :-) I am very glad that I finally finished the thesis. It was not an easy task. Ironically, my PhD was in immunology. I study HIV infection of T lymphocytes and how the virus is being recognised by immune receptors in infected cells. Now, I am about to start a post doctoral research in the same subject.
I totally agree with you regarding the psychosomatic diagnosis that is becoming increasingly common nowadays. I was even given Zolof and Xanax to treat my "Anxiety induced symptoms". I didn't take neither of these drugs.
I only got tested for B12 and folate. I will ask my doctor to check some more vitamins and minerals. do you have any suggestions of which ones to check ? I think vitamin D should be on the top of my list since I live in Norway. I think half of the population here is deficient. Unfortunately, I am so ignorant about nutrition! I don't pay much attention to the nutritional content of my diet. My BMI is just under 25 and I try to keep it that way. Thank you for the link to the threat, I will read it carefully. I am not sure what synthesis exercise is but I will do some research. Thank you again. I will post lab results as soon as I get them.

Zyklon: Yes, I had some tests, I was not fasting though. Here are the results. Blood glucose: 5.1 mmol/L and HbA1c: 5.4. Both are in the normal range according the report. Looking forward to read our threat that Jimmylegs recommended. I am sure I will learn a lot. Thank you for sharing your story :-)

Again, I want to thank you all for your help. I feel so much better psychologically to be listen to and be taking seriously.
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Re: Having scary symptoms, could it be B12/Folate deficiency

Postby jimmylegs » Tue Jun 19, 2018 9:27 am

aha, interesting! online anywhere? now you'll have me refreshing my memory on nutrient status interactions with HIV susceptibility. good luck with the post doc! i'm still a (chronic) masters candidate but the phds in my cohort are just starting to fan out into post doc positions now :) exciting times!

glad to hear you avoided your bs prescriptions. i do the same and i'm happy to do so!

as for the question re which tests to request - the answer here is related to my facetious 'topic synthesis' homework assignment. zyklon went through so many recommended tests and came back with results so (relatively) quickly, he had me on my toes to come up with additional test options lol. if you made a short list of everything i asked him to do, you'd be on the right track :D and if you reviewed my feedback re his results, you'd be pretty set up to know what you're looking for when your own results come in.

for starters, you can check if you already have serum calcium (and other electrolytes) as well as serum ferritin results available.
for new tests, as you say - serum vit d3 (specifically 25(OH)hydroxycholecalciferol), also serum magnesium, serum zinc and serum copper. don't believe the hype re more expensive rbc magnesium testing.

nice to know but not need to know: serum uric acid. has been found to be low in MS patients, and at first test my own serum levels exactly matched the average for ms patients in the literature. (for me my low ua levels were a function of zinc deficit - once corrected, ua normalized nicely after years of misguided attempts to improve status without correcting the underlying zinc problem)

we will look forward to new bloodwork results when you have them! happy reading (the learning curve is quite a ride!!)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Having scary symptoms, could it be B12/Folate deficiency

Postby Zyklon » Tue Jun 19, 2018 6:38 pm

Your HbA1c is high. You need more physical activity and/or better diet. Another good idea is liver function tests. Fatty liver maybe?

Follow a low fat, low sugar diet and spend more time outdoors. I bet only in one week, you will be better.

Cheers ;)
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
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Re: Having scary symptoms, could it be B12/Folate deficiency

Postby NHE » Wed Jun 20, 2018 12:05 am

Provenance wrote:MCV: 87 FL

That's a reasonable value. An elevated, but "still within the normal range," value would be around 98-100 fL.
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