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Vitamin B12 Deficiency - maybe this will help someone else?

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    #16
    B12 MIC Shots helped me to cure my B12 deficiency

    Hi,
    I was carrying some of the symptoms of b12. At first, I ignored them thinking it will get cured by time. When it persisted for a longer time, I went for the tests and there it was a severe b12 deficiency. So, I went for the obvious treatment, injections, thinking that it's a short process and will recover in a few weeks. I was wrong, I still remember the time, swollen body, aches, rashes and what not. So, I switched to its liquid version, Super MIC B12 which one of my friends was using to deal with her energy issues. It is actually effective, it is made of natural ingredients, super tasty and most importantly, painless. That is the thing I wanted. Must try.

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      #17
      Originally posted by annwithane View Post
      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!

      Anne
      This an older post but one which merits review.

      It has been observed for years that vitamin B12 deficiency and MS share certain pathological changes.

      Symptoms of Vitamin B12 deficiency can mimic MS; B12 does affect myelin.
      Importantly, the reference range used to decide if you are “deficient” in B12 varies significantly in different countries.

      Since B12 is non-toxic and we just piddle it out if over-doing it, we may want to make sure we are getting enough.

      B vitamins may interfere with melatonin production so you want to take B vitamins, including B12, early in the day.

      Also, one study suggested that IFN-B-1A (Avonex) reduces B12 levels.

      Some pwMS have reported a reduction in fatigue after taking an increased amount of B12.

      I will include a study below. No, I’m not advocating taking lofepramine or L-phenylalanine but the B-12 part is worth noting.

      A randomised placebo controlled exploratory study of vitamin B-12, lofepramine, and L-phenylalanine (the "Cari Loder regime") in the treatment of multiple sclerosis.

      https://www.ncbi.nlm.nih.gov/pubmed/12185153


      OBJECTIVE:

      To determine whether combination therapy with lofepramine, L-phenylalanine, and intramuscular vitamin B-12 (the "Cari Loder regime") reduces disability in patients with multiple sclerosis.

      METHODS:

      A placebo controlled, double blind, randomised study carried out in five United Kingdom centres on outpatients with clinically definite multiple sclerosis, measurable disability on Guy's neurological disability scale (GNDS), no relapse in the preceding six months, and not on antidepressant drugs. Over 24 weeks all patients received vitamin B-12, 1 mg intramuscularly weekly, and either lofepramine 70 mg and L-phenylalanine 500 mg twice daily, or matching placebo tablets. Outcome was assessed using the GNDS, the Kurtzke expanded disability status scale; the Beck depression inventory, the Chalder fatigue scale, and the Gulick MS specific symptom scale.

      RESULTS:

      138 patients were entered, and two were lost from each group. There was no statistically significant difference between the groups at entry or at follow up. Analysis of covariance suggested that treated patients had better outcomes on four of the five scales used. Both groups showed a reduction of 2 GNDS points within the first two weeks, and when data from all time points were considered, the treated group had a significant improvement of 0.6 GNDS points from two weeks onwards.

      CONCLUSIONS:

      Patients with multiple sclerosis improved by 2 GNDS points after starting vitamin B-12 injections. The addition of lofepramine and L-phenylalanine added a further 0.6 points benefit. More research is needed to confirm and explore the significance of this clinically small difference.

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        #18
        Great thread! I have known that misdiagnosis occurs between MS and B12 deficiency but didn’t know there is thought to be a cooralation with MS.

        My pernicious anemia (B12 deficiency) was diagnosed at the same time as my MS, although I probably had MS at least 15 years prior to diagnosis. I did the monthly injections (IM) at the doctors office. I was then offered a nasal spray that didn’t work well. I believe now, looking back, that nasal congestion would inhibit absorption. Sometimes I wonder if some of my symptoms are residual from B12 and not my MS. 🤔. Thus, I don’t recommend using that product.

        That said, I was injecting Copaxone daily SubQ and was told I could do my B12 SubQ too. So I have been injecting B12 that way for over 5 years now. I inject every other week as going monthly was just not frequent enough (even though my docs assured me it was.)

        I also agree that the cynocobalamin is not as effective as methylcobalamin; however, it is hard to get insurance to pay for methylcobalamin. (To my understanding it is much more costly.) Thus, I inject the cynocobalamin every two week and sublingually supplement periodically the methylcobalamin to be sure to keep my levels up.

        It has almost been a decade now since taking B12. There was a period of time where there was a shortage of the vitamin...I don’t now remember why though. The good news is that this is an easy and inexpensive (in comparison to MS drugs) illness to treat. The key is to maintain sufficient levels of B12. I wish I just had this B12 deficiency and not the MS too. Shucks! LOL!! 😭

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          #19
          Weakness and fatigue are common symptoms of vitamin B12 deficiency. They occur because your body doesn't have enough vitamin B12 to make red blood cells, which transport oxygen throughout your body. If anyone who has symptoms of vitamin b12 should start taking natural food sources and other supplements that are available in the market. These days, the lipotropic liquid supplement is also available at various online stores, you could try them for fasters results than pills. Although liquid supplements like Super MIC B12 doesn't have any side effects. I personally tried it for 8 months.

          I think you must try it once!
          Last edited by KoKo; 03-22-2019, 02:53 AM. Reason: removed url

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            #20
            Originally posted by albertsen View Post
            Weakness and fatigue are common symptoms of vitamin B12 deficiency. They occur because your body doesn't have enough vitamin B12 to make red blood cells, which transport oxygen throughout your body. If anyone who has symptoms of vitamin b12 should start taking natural food sources and other supplements that are available in the market. These days, the lipotropic liquid supplement is also available at various online stores, you could try them for fasters results than pills. Although liquid supplements like Super MIC B12 doesn't have any side effects. I personally tried it for 8 months.

            I think you must try it once!
            Hi Albertsen.

            I noticed this is your first post. Please head to the Tell Us About Yourself forum to introduce yourself and your involvement with MS.

            To anyone considering B12 supplementation, make sure you have blood levels tested and review with your doctor whether needed and correct dosage.
            Kathy
            DX 01/06, currently on Tysabri

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              #21
              My mother has pernicious anemia, she produces NO B-12 and has to have a large dose every 3 weeks via injection by the nurse for the rest of her life. This thread caught my attention as I never read where B12 and MS were linked. She does not have MS, though my mom has 5 autoimmune diseases.

              She went a long time before being diagnosed, this happened in her mid 30's and she was deathly sick. Maybe because it was in the 1970's and her young age they missed it. Usually pernicious anemia tends to show up in the elderly. (her mom, my grandmother, actually got in when she was in her 70's). Usually one who does have pernicious anemia will also has Vitiligo, and they both did.

              I get tested once a year for it because it does run in my family. Because she produces no B-12, the oral vitamin is useless, so her case is severe and has be via injection.

              A lot of doctors do not test for B12 unless you ask them, so if you are worried about it, definitely have them run the test. The best thing is they say you don't have a deficiency.

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