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Vitamin B12 Deficiency - maybe this will help someone else?

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    Vitamin B12 Deficiency - maybe this will help someone else?

    After extensive testing, my neurologist is 95% sure I do not have multiple sclerosis! He believes my neurological symptoms are caused by a Vitamin B-12 Deficiency. I’ve only posted a handful of times but everyone was always welcoming and helpful. I want to repay that kindness by sharing my diagnosis. I hope it is helpful to someone else, especially those in limbo or just starting the testing process.

    At one point or another, I think everyone who is worried about a possible MS diagnosis hears that a B-12 deficiency (as well as other things) can mimic MS. However, a B-12 deficiency just sounds so benign and my symptoms did not feel benign. When the doctors said “we need to rule out MS”, it was MS that I focused on. Being very honest, I was convinced it was MS.

    My symptoms started last June and varied from day to day. I never knew what to expect. The one pattern I noticed was that my symptoms would intensify around my monthly cycle. I experienced the following:

    - extreme fatigue (exhausting to walk from bedroom to kitchen)
    - difficulty walking, had to concentrate to move my legs
    - couldn’t think in a straight line/brain fog
    - heat intolerance (after being cold my entire life!)
    - muscle stiffness in leg(s) and sometimes arms (would keep me awake at night)
    - would feel extremely hot, like a hot-flash but it would last for hours (no fever)
    - tingling (it would move around day-to-day but it was everywhere from my scalp to my toes)
    - arm would be numb yet it felt like I was wearing an elbow-length glove
    - numbness on left side of face
    - burning soles and palms
    - brain felt like it was on fire during the roughest days
    - internal organs felt like they were shivering, yet I was super hot on the outside
    - toes felt cold and wet
    - leg felt warm water running down
    - random twitches
    - and probably other things that I don't remember at the moment

    Testing began with lots of blood tests and a brain MRI. The MRI showed lesions not consistent with MS. I then had a spinal MRI, lumbar puncture and EMG on my legs. Everything was negative, yet I was still a mess.

    The important part is that my B12 level was tested at 248 pg/mL. This is within the normal range of 211-911 pg/mL. Luckily, my family doctor started me on monthly B-12 shots to help with the fatigue (not due to a diagnosed deficiency).

    It was during a recent follow-up with my neuro that I learned of the B-12 diagnosis. My six month repeat brain MRI is stable. My B-12 level is up to 459 pg/mL. The neuro would like to see it between 600-800 pg/mL.

    I have very gradually improved since last summer. I still have symptoms but I am hopeful that they will continue to fade away. I am continuing the monthly B-12 shots and have added a high daily oral dose. As an aside, I also started with a Vitamin D deficiency of 10. I am working on getting that up as well (last test it was up to 43).

    After the B-12 diagnosis, I found a wonderful book. It’s called “Could it be B-12? An Epidemic of Misdiagnoses” by Sally M. Pacholok, RN and Jeffrey J. Stuart, DO. It is filled with great information. In particular, the authors argue that the current “normal” testing range for B-12 is set too low. They believe anything under 450 pg/mL should be considered deficient. My neurological symptoms appeared while my B-12 level tested in the current range of normal.

    JerryD is a wonderful advocate, reminding everyone to know their Vitamin B-12 and Vitamin D levels. I wholeheartedly agree with him! If any of my experience sounds familiar, please consider re-checking your levels and get the exact numbers, not a vague “it’s within the normal range”.

    Please know that I am not in the medical profession and I’m not associated with the above book in any way. Maybe Redwings or 22cyclist can elaborate on what I’ve tried to share in this rather long-winded post. Sorry about that!

    Thank you to everyone on this site. I learned so much and your support was a great comfort! Wishing you all the best!


    I went through the same thing. During diagnosis, I discovered my B12 was in the 100's. I was convinced this was the problem, the doctors blew off this theory.

    Unfortunately, I got my numbers up over 1000 and I got no better. It's been over a year & still no real improvement.

    I read the book as well. It's pretty scary how many misdiagnosed patients are out there. Even though it didn't turn out to be my case, I strongly urge people to check their B12 as well.

    Many doctors ignore this issue or refuse to believe it can cause so many severe symptoms. You really have to be your own advocate & challenge them at times. The only reason my levels were even tested was because I pushed for it.
    Diagnosed: May 2012
    Medications: Avonex - stopped 12/14
    Plegridy - starting 12/14


      I got a thrill that you discovered the 2 vitamin deficiencies that are 'epidemic', IMO, and you are correcting them. And your doctors are 'on-board'. As I have been posting, the accepted numbers are too low. I almost cried when you mentioned my advocacy and that you are deficient and do not have MS. Something that you can fix !
      I am ignoring my cardiologist and PCP, who claim that 25ng/mL is a 'safe' level of vitamin D in the blood test. I take 5000 iu's to 7000 iu's daily. and I take 2000mcgs to 5000 mcgs vitamin B-12 daily. I also take B complex and 400 mgs. magnesium daily. I check with my doctors regularly about these dosages. I wonder when they will be convinced that these dosages are doing me right ?
      Good luck


        Westgrl - I'm sorry that your illness wasn't due to just a B-12 deficiency. I guess it's common in MS as well. A small part of me is still holding my breath but for the most part I do think my symptoms are just B-12 related and I'm very grateful. It sounds like you are proactive about your health and that's the best thing you can do for yourself. Keep it up!

        JerryD - I know you must feel like a broken record sometimes but you really are doing a good thing for people who are seeking information about MS/neuro stuff. I'm glad the supplements are helping you! Take care!


          JerryD, you have helped both my daughter and I...I took her in to the doc because she has been so fatigued. Surprise, surprise - she was deficient in Iron, B-12 and vitamin D. Getting her on everything she needs got me looking into my own issues, and your voice (posting voice!) was constantly in my I am now taking both of these things, plus magnesium, potassium, multi-vit's, vitamin c, fish oil, flaxseed oil, and a few other things I can't think of right now (daughter is taking them all too), and she is feeling better already, and I am feeling better than I have in several years!! So, THANK are getting through to some of us, and you are changing lives!!! I appreciate it more than you'll ever know!!

          Success is a journey, not a destination


            Thank you so much for this post and for the name of that book. I will be ordering it this week.

            I still have not had my levels checked, as my GP and the neurologist I saw both just blew me off when I asked about doing a blood test to check. Yet the neuro could not tell me what was causing all my symptoms and says my brain MRI is fine, just a couple spots we will watch.

            After JerryD mentioned it, my husband and I have started doing our own research and I have started taking B12. I have switched drs and will be seeing the new one next week and hopefully a referral to a new neuro after that. But I am insisting that these tests are run. Whether it ends up to be just a vitamin deficiency, MS, or something else causing my symptoms, I'm sure having this knowledge can only help.


              a better B12..

              I just started injecting hydroxo-cobalamin, instead of cyano.

              It is noticeably stronger in effect for me who has a B12 deficiency.

              I don't have MS but I am recommending for you to talk to your doctors about switching from cyano.

              Fight the doctors who don't tell you about hydroxo! Cyano is only a little bit cheaper and you only live once.


                b12 deficiency facial paralysis

                I have a question for all of you.

                I have b12 deficiency, have been treating it for 10 months.
                Does any of you, who have b12 deficiency, experience facial paralysis?


                  I joined to post a link to a website but the system won't let me until I've got at least 5 posts - who can blame it!

                  There has long since been links between MS and B12 deficiency (although the site I was going to post to doesn't mention this) but they seem to be getting more frequent.
                  A lot of cases are coming to light, where as the first poster stated, their MS is actually misdiagnosed b12 deficiency.

                  I suspect the misdiagnoses occur because many doctors don't really understand b12 deficiency.


                    ... and another point to note is: if you sustained neuro damage when your b12 levels are deficient (and that doesn't simply mean coming up as deficient on the serum b12 test!) then, of course, that damage may be permanent.
                    Just because your b12 levels go up at a later date simply means the b12 level is normal in your blood at that current time - it doesn't mean all damage has been reversed and neither does it mean your cellular damage has been halted.


                      Other options?

                      For those struggling with B12 deficiency, I recently heard about a new alternative to the injections. Has anyone heard of it, it's called Eligen B12? Apparently it is the first and only true oral prescription alternative to the intramuscular injection. I recently read that it works even if you don't have intrinsic factor (so even if you don't have normal gut absorption). I think it came out a month or two ago?


                        My B12 experience

                        In 1996, I had numbness that came and went, then stayed. I went to the doctor, and they did all sorts of tests and sent me to a neuro. They didn't find anything - VEP normal, brain MRI clear. Then they did blood tests and saw that my vitamin B12 levels were incredibly low - so low, they double-checked the calibration of their equipment. Once they got the levels back up, the numbness went away, slowly.

                        Fast forward 11 years. I woke up from a nap with the same kind of numbness, in another place. I was in a developing country at the Equator for a long-term stay. They weren't even able to do a vitamin B12 test there! So I convinced them to give me the shots, and I felt a little better.

                        Six months later, back in the U.S., my new doc there started looking into it all. Yup. M.S. Pretty speedy diagnosis at that point (11 years later, ahem...).

                        I don't want to rain on your parade, but I did want to point out that there is some question about low B12 and exacerbations happening at the same time. I believe it was in the journal Annals of Neurology in the mid-90s (1996, or 1994?) that a general practitioner in the UK wrote in to say he'd had several MS patients exhibit low B12 during exacerbations - and that somebody ought to look into it.

                        Since getting the definitive MS diagnosis, I've not looked any further into that issue. I did think it was worth sharing the information, though. If anybody finds anything, please post - I'm curious enough to read, but not enough to go hunting.


                          Hi everyone, i have not checked this thread for some time. I am surprised to see that several posters have named me a the poster that 'raised the alarm' about the damage that low vitamin B-12 levels can cause. I am not a doctor andI don't play one on TV. I am not proposing that low vitamin B-12 levels and low vitamin D levels are the cause of real problems in people that have neurologic conditions or ailments. Only that these low levels could be the cause. They are easy to test for and they can be treated easily. I hope all of you benefit from this info. Good luck



                            Did the neuro ever explain the lesions? If not consistent with MS, did they say what may have cused them or if these can occur with B12 deficiency? Curious because I had one neuro say mine weren't consistent with MS, but all others said it was MS. Thanks



                              I'm just popping back in here with some very interesting info:

                              I was directed to a book released at Christmas: B12 Deficiency and Chronic Illness by Mike Newman (it's Kindle) and in it there is lots of info regarding the mistakes being made about the misunderstandings involving B12 deficiency.
                              It's too complicated to go into here, BUT, he also points to recommendations being given to people suffering from motor neurone disease by ALS International to inject with methylcobalamin every day in massive amounts.
                              Apparently this is prolonging the life of many of the patients by up to 2 years.
                              There are also Japanese studies going on about it.

                              Anyway, there is lots of stuff in there that I didn't know - in fact most of it I didn't. Including the fact that the treatment they are giving most of us now is only enough to raise blood levels and is not enough to repair nerve damage. Other stuff also about malabsorption etc and the fact that leaky gut is usually linked to neuro and chronic illnesses.

                              Oh, and also that it was always known, at least back in the late 1800s that people with the illness did not die from anaemia but from neuro damage.

                              Hope this helps someone out there - and if you know of anyone with ALS please inform them as a matter of urgency.