My B-12 AND Vit. D are SEVERELY LOW! +Update

[poeticsoul]

So last Wed at the MS Center, while there for my LP, I got some other results while there, from blood work mainly and I am once again severely B-12 deficient!!! I now have to give myself B-12 shots once a day, for a week, then once a week for a month, then once a month, most likely for the rest of my life, he said!

Because this is the second time its happened, (happened about 3 yrs ago) my MS Neuro explained that my body isn't absorbing B-12 like it normally should, due to some defect in a gene...soooo now, he said it'll be a lifelong thing to replenish my B-12! I gave myself the shots a few years back, so I know how to do it and got use to it, so oh well...we do what we gotta do!

He did more blood work too to see if they can pinpoint WHY the B-12 is so very low:
Anti Parietal Cell AB
Anti Intrinsic Factor AB
Serum Glucose

Also the blood work shows that I am 'Anti-JC Virus Antibody Positive' He explained about that-that it will be an issue IF I have MS and then can't take certain treatments because of it.

My Vit D is also SEVERELY low again so I need to up from 1000 IU to 5000 IU a day and may have to go see and endocrinologist for more aggressive treatment because this too, is an ongoing thing and at one point was only a level of 6! EXTREMELY low-almost non-existent.
It looks like my body just doesn't absorb these vitamins well and spits em out, as doc explained. He said it could be an issue with other, if not ALL vitamins in my body-or NOT in my body, as it were. :/

This morning I went for my VEP and SEP testing and yeah, the somatosensory part was just so much fun...not. So now, more waiting.

While I know that low B-12 and low D can happen along with having MS, I also know it causes much the same symptoms/issues as MS, including the demyelination in my brain! So my prayer is that this all turns out to be BECAUSE of the B-12 issues and NOT MS after all! I will GLADLY give myself shots for ever if it means NO MS DX!
Time will tell as this process moves along.

Cathy

[polopuppy]

Hi Cathy,

As far as your vitamin deficeincies go, there are a few things you can try. First, what kind of B12 supplement were you using? I was very low in B12 but once my doctor advised me to take sublingual B12, my numbers finally started to rise. B12 is a poorly absorbed vitamin and it is known that only 2% gets absorbed in a healthy individual. To be absorbed, there must be high stomach acidity and sufficient amounts of intrinsic factor. By taking the B12 under the tongue, you bypass the GI tract all together.

As far as the Vitamin D goes, there is an easy fix for that. I had extremely low numbers of Vit. D so I was placed on huge amounts of supplementation. I was taking 50,000 IU a week, plus 800 IU each day. After a year and blood tests every 3 months, my numbers did not budge.

Off i went to see the endocrinologist and she advised me to take a water soluble form of Vit. D called Replesta NX. It is a wafer that you take once a week. You can buy it online from any of the pharmacies or Amazon. There is no prescription and you can not overdose. After one month, my numbers went from 6 up to 24. The next month, I was at 32. I have not been above 20 for years. I will have my levels checked again in January but I can expect to take it the rest of my life.

Try these first before you spend money to see a specialist. Good luck. I hope all your issues will be vitamin related and not MS.

[JerryD]

I have been talking about these 2 vitamin deficiencies on this board for several years, but, I guess it hasn't been getting through to many of you guys and girls ! I hope that you figure out a solution to your predicament . I was under 20 with my first vitamin D test. It took about 2 years of supplementation and I am now above 50. Good luck

[Seasha]

I have been talking about these 2 vitamin deficiencies on this board for several years, but, I guess it hasn't been getting through to many of you guys and girls !

Come on Jerry - be fair now ~ poeticsoul hasn't been here that long or posted that much. You are right however that vitamin deficiencies need to be on our radar and we need to get our levels checked periodically.

Poeticsoul - both my levels were at one time low and like polopuppy, I take a sublingual B12 - it absorbs into your blood stream faster too. I also take D3 drops daily (10,000) and I was told by my naturopathic Dr. to take fish oil capsules with it for better absorption.

I hope that taking these supplements will get your levels up. It may take some time, but don't give up. And get your levels checked periodically!

Hope it's all just this and not MS!
Take care

[JerryD]

Sorry, you guys ! Just trying to live up to my 'snarky' reputation !

[Myoak]

Hi Cathy,

Even if you don't have MS (and we hope you don't) your vitamin D level is extremely low. Last week a very good article was published which supports the well-recognized benefits of vitamin D in MS. The title is, "High Vitamin Levels Linked to Lower MS Disease Activity" if you want to Google it.

Interesting what your doctor said about a genetic issue relative to B12. It has also been found that a genetic issue is often involved when people with MS have low levels of vitamin D. Often, MSers must take an increased dose to achieve a sufficient blood level for good health.

Best to you, Cathy.

[poeticsoul]

Thank you all for your insight and knowledge. I appreciate it very much!
I am taking the B-12 shots to get the levels up fast. I would think that direct shots would be a quicker way than anything. ? lol I've been down these routes before with BOTH the severely low B-12 and the D and both times had treatments via shots and high doses of D for awhile, then continued on lower doses of them, but as I said my neuro explained-I most likely have an absorption problem whereas my system simply won't absorb and 'keep' these vitamins I need, so yeah, gonna get to an endocrinologist soon.

I just have so much going on right now, what with all this testing, stress and worry, me not driving, as well as my fiance being away in Georgia, since 10 days ago, and till Nov 23 for training for a new job he started! Not use to being alone like this!! lol

Before my divorce I was always around people-my kids and grandchildren mostly and since leaving, getting the divorce finally-over 1 1/2 yrs ago after being told "You'll never leave me and I'm certainly not leaving! I pay the rent and bills!" etc etc etc (my ex is an emotionally/verbally abusive narcissist, who had NO sympathy and didn't even believe I have pain/health issues, who I stayed with for 31 yrs (married at 16 and pregnant but never got a TV show! lol!!) till I FINALLY said, NO MORE! and filed for divorce and well...left! lol ) But yeah, 2 of my 4 grown children live with him still and only one of those 2-my daughter, 21, the youngest of my 4, speaks to me.

My youngest son, hasn't spoken to me in over 1 1/2 years. Breaks my heart because he and I were so close. But he believes his father's lies and is under his influence. (ex is convinced and convinced others I left him BECAUSE of Gary, who in fact, I didn't even meet up with him on facebook until I was already planning to leave and we had only even been talking as 2 old friends, and NEVER did I think we'd be together someday then and was quite shocked when he said he'd like to see me after I was divorced and see where we led...and I didn't SEE him until I was legally divorced, because I am a Christian woman and would not cross that line.)

My other 2 oldest sons are busy, busy, busy-oldest has the 3 children and always working on the house they recently bought-but he is who took me last week for my evoked potentials, so got to see HIM at least for a bit lol he lives an hour away.

I use to see them all the time, he and my grandchildren, but since my divorce, not much anymore because of distance and me not driving-although they have had us up there 3 times now-which is great and progress! lol They are getting to know my fiance, Gary more and more and I know it will all take time for them to adjust, but I stayed all those years for their sake and hid so much and finally decided I wanted ME back and wanted to find someone who loves ME and I did! Turns out, I wound up being with my first true love from childhood/teen years! lol he was my next-door neighbor and we dated a bit but age was a factor then to his parents-he was 5 yrs older.
Not anymore, it isn't. lol
He NEVER married all these years! And well, here we are! lol

Its AMAZING being with someone who really cares and shows it and has concern! He's actually CRIED for me and what I'm going through and when the MRI results came in that there was NO lesions on my c-spine, as originally thought/seen...he actually got on his knees, hugged me and cried tears of happiness!! Which made ME cry that someone actually cared THAT MUCH! lol
I NEVER had that before...ever.

And my other son (who only just met Gary for the first time in Sept) is a very busy EMT for both his town AND a local hospital, AND is busy going through the process to become an NYPD officer!! Oh the worry and stress never ends....lol!!


So yeah, I don't do lonely well... :/
Anyways, I digress... I tend to do that. lol! But as you can see...there is a lot on my plate right now, besides all this 'Possible MS' stuff. Stress doesn't help my existing diseases and I am feeling the effects of it all now as pain has been much worse these past few weeks. Plus the weather changing adds to it all.
I just want to get back to a sense of normalcy but is there really even such a thing anymore in this crazy world? lol I DO know one thing, I AM much happier as far as my love life and have found my REAL soulmate and God knows what He is doing and His timing is always perfect.