Multiple Sclerosis & B-12: The Test Results Are In

 

 

Yesterday, on my way in to see my doctor I shared this pic on social media along with the caption “Heading in to dr appointment to have B-12 levels checked again. Was super low at last appointment and dr wanted me to come in weekly for shot BUT I decided I wanted to try and get it up on my own. Pretty sure the B-12 Vitamin gummies I have been eating have done jack shit but worth a shot. Or should I say worth trying to avoid getting a weekly shot! We shall see.”

Which brought about some great discussions in a few of the MS groups I am in.  Prior to having my blood work done last spring and receiving a message from my doctor that my “levels were low” I had never even thought about my B12. I was surprised to discover how many MSers out there actually did know about their own B12 and to learn that testing levels might be recommended if you:

  • experience tingling in your hands or feet
  • issues with balance
  • weakness
  • confusion

Check, check, checkity check.  According to Healthline, low levels of B12 can lead to permanent nerve damage, deteriorating brain function and memory loss.  Ah,again check, check and check!:) In their article 21 Important Facts About Vitamin B12 Deficiency Health.com says “some of the earliest signs of a deficiency include feeling dragged, confused, and weak.”  I’m pretty sure that most MSers would say that would describe them.  Because many of the signs of B12 deficiency can be attributed to the simple fact that we have MS and these things are a given, you may be like me and have never given it a thought.

Last night I received an email from the lab at my doctor’s office.  They were done testing my blood AND….the mind blowing news is that my levels are up!  As in to a “good/normal/acceptable” level.  Here’s the truth, it’s NOT that I doubted the delicious gummies, it’s that I doubted my own regiment of actually remembering to EAT them every day, or even every other day.  Some weeks I would be great about it, and others not so much.  It didn’t help that I misplaced the jar for about 3 weeks somewhere in the middle of the big move this summer.  So heading in yesterday I was pretty damn sure that I would be signing up for weekly B12 injections for the next month or so.  Some of the group members mentioned giving themselves the injections, but remembering my fiascos of giving myself shots in the past (Shooting Up An Orange Avonex: Just Do It) I knew that wasn’t going to be an option. Imagine my surprise (and delight) to discover that for the moment that won’t be necessary – SHOTS avoided!!!!! And I can keep eating these delicious gummies.

 

 

 

b12-gummies

Nature Made Energy B12 adult gummies (1000 mcg per serving)

B12 levels are measured based on picograms per milliliter (pg/mL) According to the information provided with my test results 180 – 914 pg/mL is considered “standard range” and between 145-179 pg/mL  is considered “deficient.”  Last spring my results showed my level as being 159 and yesterday, I scored a 306 pg/mL.  It’s amazing what a small medical accomplishment can mean to me.  I paraded around the house all night, repeating “hey, did you hear I passed?”  “Did you know that I passed my test today?”  I am pretty sure Shawn and the kids were about ready to kick me out.  Good thing the World Series was on to distract them!

As with so many things when it comes to modern medicine and the internet, one will find the advise on “appropriate levels” to vary.  According to Healthline below 150 pg/mL is considered low, 200 to 600 pg/mL is normal and 800 pg/mL is high. WebMD says 110–1500pg/mL is normal and Medline Plus says normal values are 200 to 900 picograms per milliliter (pg/mL) But as they point out “Normal ranges can also vary from laboratory to laboratory, so it’s important to discuss your results with your doctor.” But the take away for me is that my new levels are within all these sources “normal” range, and so therefore today, I am apparently NORMAL!!!!!!

But this did bring about a good point – which is that I need to remember to be proactive in my own care and to be my own advocate.  Even the best of doctors is not going to think about me and what I need all the time.  That’s my job! I tend to shy away from doing much research about these types of things mainly because there can be such varying opinions and information that I just get overwhelmed and end up feeling more confused than when I started.

 As I said in my first post of 2016

 Another Year With MS- Being a Strong Motherfucker & Living Out My Dream

“I am not ever going to be the one to embrace the complete “holistic” way of living (vegan eating, green smoothie slurping, yoga going gal doesn’t seem to be in my future) but I do know that I am growing, a work in progress, learning more and more about myself. I am spending time realizing things about me and finally putting myself first….sometimes. What I am choosing to take away from this is that everything in moderation is a great way to face life”

But in addition to moderation, I need to stop and listen to my own body and what feels right or good and to continue to seek out things that will allow for a healthier version of me, MS or not.  I will continue to read about Multiple Sclerosis and I look forward to many more great conversations.  There are so many unknowns about living with a disease like MS, but educating myself is something that I can control and is one more way to fight back against this stupid fucking thing.

****If you haven’t had your blood levels checked recently it may be something to talk to your doctor about, not only for B12, but all other levels as well.****

8 Replies to “Multiple Sclerosis & B-12: The Test Results Are In”

  1. Those gummies are most likely full of sugar, gmos and other synthetic rubbish which can contribute to autoimmune conditions. There are much better sources of Vit B. Also, have you done any research on how gluten is related to MS or how many MS sufferers have improved / recovered on a Paleo lifestyle? Our bodies are capable of incredible healing given the right nutrition and minus the rubbish. Unfortunately doctors and specialists aren’t educated in how to treat or cure disease naturally and they don’t advocate for it. I guess they’d be out of a job if they did! It’s really worth researching.

    1. Thanks for sharing Debbie. I know many of my readers watch what they eat – whether they are vegetarians, vegans, dairy-free, paleo or others. I am a supporter of what works for each of us as individuals.

      Cheers,
      Meg (BBH)

  2. I’m a 19 year MS survivor with no major relapses B12 is a daily regiment for me Your attitude about MS is so much like mine it’s an believable my doctor has asked me many times how I do it And I believe keeping up with what is going on with MS and not being a burden to anyone Has always been my goal

    1. 🙂 thanks so much for sharing Cheryl,

      I have to admit to not always keeping up with all things but I am trying to get better about that:)

      Cheers,
      Meg (aka BBH)

  3. Funny, a couple years back, my GP told me to lay off the B12! I have taken it on and off for stress. And this condition is stressful for sure. My new try is Biotin. It was mad expensive and I was let go. However, doctor found new place and whilst not chaap,doable. So we’ll see.

    1. One of the only things that I have managed to learn in the ten years since I was DX is that we are all different and our bodies react/respond differently to things. I figure it is best to at least KNOW about all the things that MIGHT help:)

      Biotin is something that I have heard about from other MSers. Let me know how it goes:)

      Cheers,
      Meg (aka BBH)

    2. I have to comment…I take whole food vitamins..b12 included. My Dr. also wanted me to get regular b12 shots plus my iron levels were so bad that that my Dr. wanted me to have regular intravenous treatments! Because of the pain, I have so much trouble eating or swallowing (Dysphagia)…vitamins are so hard to take! Advice… try whole food vitamins…no nausea!! Way better absorption!! Medical Marijuana has been my best friend thru this whole thing! (besides my awesome husband,of course!) Trying to get away from all synthetic drugs…the side effects are so bad!!!

      1. Thanks so much for sharing Terribelle d!

        The more we all know about what works and what doesn’t work for others, the better equipped we are to figure out what is right for our own bodies & lives.

        Cheers,
        Meg (aka BBH)

would LOVE to know what you think...