This Is MS Multiple Sclerosis Knowledge & Support Community

Background: a decade ago I had a bunch of symptoms and my doctos were sure I had MS. I didn't have lesions, though. Then a bunch of life happened and I didn't have insurance for a while. My symptoms decreased overall and I went on my way. I've had periods of increased vertigo, numbness and tingling, etc and gone to the doctor but it has been mild enough to not lead anywhere.

For the past month, I've had increasing vertigo, lightheaded, bad headaches, disorientation, brain fog, falling, memory issues, etc. Doctors are taking me seriously again and I'm waiting for appointments for a neurologist, MRI, and potentially lumbar puncture.

In the process of this I realized I stopped taking my usual 10,000 IU of D3. My husband thinks I might have gone a month without it. I'm taking it again now and my symptoms haven't subsided yet. I have been reading about the links between MS and VitD and wondering if it is possible my symptoms are due to stopping the supplement and if taking it all these years have kept symptoms at bay.

So my question: as I wait for my appointments, should I keep taking my D in hopes of getting better or should I hold off in hopes of getting an actual diagnosis if I do in fact have MS?

hi and welcome (back) terri

imho while you are waiting for your appointments you should do everything you can to keep *all* your essential nutrients in optimal shape, especially the ones relevant to ms which include but are *by no means* limited to vit D3.

docs are not generally likely to refer to a dietitian, but a diet professional's approach can point up clear gaps between an individual's status quo, and daily minimum essential nutrient requirements. bloodwork is great, but most relevant tests are infrequently ordered and less frequently still, are they properly interpreted.

if i were you, at a minimum i would ensure dietary emphasis on nutrient dense foods, while avoiding or compensating for any anti-nutrient medications, or other influences such nutrient demands from physical exertion exceeding nutrient inputs, alcohol, etc. if i considered my dietary situation suboptimal and/or inflexible, i would probably also start using a high quality, high potency (eg designed for athletes) multivitamin and multimineral product, not to mention a great omega 3 / DHA / EPA product. and if i were planning to take 10K D3 per day, i would certainly make sure i was matching that intake with relevant d3 cofactors https://www.vitamindcouncil.org/about-v ... -minerals/

what's your routine been like lately, other than lapsing on the d3?

Thanks for your response.

My multivitamin (Smarty Pants Women's) has Vitamin K (32 mcg, so less than the suggested 90 mcg), Zinc, and Vitamin A (1500 IU). Do you have any recommendations for good magnesium (I know Magnesium Citrate is the most bioavailable, and I've taken Natural Calm in the past) and boron?

I also take a lot of fish oil, a glucosamine/chondroiton/msm supplement, Evening Primrose Oil, and Iron daily.

I can't think of any other changes, besides developing chronic hives in November.

no problem

re the multivit, re vit K you can work on that in food, or if you go for a supplement, choose vit k2. personally, i am having tomorrow's k2 supplement in the form of baked brie ;)

zinc in that product looks quite low. there's almost double that in the gummies i get for my nephews, and they are both under 10. where is your zinc coming from mostly in your day to day food sources?

natural calm is a great product. citrate is not as soluble/bioavailable as magnesium glycinate however. i am using this one lately
http://orangenaturals.com/essential/mag ... g-60v-cap/
and have previously used kirkman labs' product, but i think they went to bisglycinate and i have had trouble with that form.

i don't personally have any specific advice re boron - my fave food nutrient content sites don't even go there, and i haven't yet run across boron being an issue for ms specifically.

back to the zinc item. in my experience, low zinc has had the most to do with poor cognitive function. i think low zinc would also align with urticaria (hives) as an allergic disorder.
here's a related kids' study. http://bit.ly/2k4X9FI
it's about asthma, but it gives a regimen for getting serum zinc levels up to the 120s (which is the sweet spot for serum zinc) and the cases showed improvement in comparison to the control/placebo group.
excerpt "Allergic disorders such as asthma, allergic rhinitis, atopic dermatitis and even chronic urticaria have a high prevalence of morbidity, with significant effects on individuals’ quality of life and high economic costs for families and nations"
"Cases and controls had low initial serum zinc concentrations [61.8 (SD 7.3) µg/dL and 60.9 (SD 4.3) µg/dL]. After treatment,
mean serum zinc level in the case group was significantly higher [129 (SD 20.4) µg/dL] than in the controls [63 (SD
8.6) µg/dL]. ... In this study we showed that zinc supplementation at 50 mg/day in children with moderate asthma with zinc deficiency significantly improved both clinical symptoms and lung function".

fyi, in another topic i just found myself getting into this cautionary tale re long term d3 @ 10K IU per day, and magnesium: http://www.thisisms.com/forum/introduct ... ml#p245642

you can figure out minimum daily mag intake by taking your weight in kg and multiplying by 7 to 10 mgs, that's the range you'd be aiming for. you can probably count on your diet for around 200mg and make the balance up with mag glycinate for daily maintenance only.
beyond that, more mag for high dose d3 management. you would likely want to add the natural calm specifically when you take d3, purely to manage its specific mag demand.

hope that helps!

Thanks for all the fantastic information!

I have a pretty healthy, though restricted, diet. I am allergic to gluten and eggs and intolerant of dairy and soy. Plus, I never eat peanuts because my son is allergic.

I eat brown rice on an almost daily basis. I also routinely eat spinach, beef, peas, cashews, dark chocolate, pork, salmon, turkey, and garlic. Do you think I'm getting enough zinc through my diet? I also have asthma, btw, and it is currently uncontrolled even though I'm on a daily steroid and an inhaled COPD med (I don't have COPD and have never smoked, but it has been found to help some asthmatics and has been helping me).

Oh, I forgot to mention that I also use Lyteshow, which is an electrolyte additive for water. I've found that I feel better when I add electrolytes, and I avoid artificial colors and sweetners so most options are out. Lyteshow has 40mg of Magnesium and 2mg of Zinc per serving, and I probably have 4 or 5 servings a day. The magnesium comes straight from sea sources, so I'm not sure how to qualify it.

Are you saying I need enough magnesium glycinate for my weight PLUS additional magnesium to cover the 10k of Vit D? How much additional? I really don't like the taste of Natural Calm so taking more of a magnesium glycinate supplement would be preferred, though at this point I'll do practically anything to get my body under some sort of control.

I greatly appreciate your help. I think I may be getting a little better with the vitd back in my diet, but I'm still struggling with blurry vision and a terrible time focusing/understanding things.

terrineedshelp wrote:.
In the process of this I realized I stopped taking my usual 10,000 IU of D3. My husband thinks I might have gone a month without it. I'm taking it again now and my symptoms haven't subsided yet. I have been reading about the links between MS and VitD and wondering if it is possible my symptoms are due to stopping the supplement and if taking it all these years have kept symptoms at bay.

The only way to know where your Vitamin D level is, is to have the blood test to check it. Simply taking Vitamin D does not mean your level will be within normal ranges or has even increased. It's also possible to stop taking Vitamin D, restart and not have the same benefit. I have experienced this and take a prescription D.

So my question: as I wait for my appointments, should I keep taking my D in hopes of getting better or should I hold off in hopes of getting an actual diagnosis if I do in fact have MS?

Having a D deficiency doesn't mean the person has MS. Vitamin D deficiencies have been linked to many other conditions and some with D deficiencies have no other health conditions. Your Vitamin D level will not have any bearing in receiving a diagnosis of MS. Multiple Sclerosis has a diagnostic criteria, The Revised McDonald Criteria, which relies heavily on MRI evidence.

I can't think of any other changes, besides developing chronic hives in November

.
MS does not cause hives. Hives can be due to allergic reactions, did you see your Dr. about the hives?

Hey there, no prob

If you are allergic and it runs in your family, it would be very interesting to see levels of nutrients with key action in the immune system, including serum zinc in particular.

you most likely have heard that recent treatment developments for childhood peanut allergy include desensitization via .. a peanut patch:
http://www.sciencedirect.com/science/ar ... 4916309666
related recent news:
https://www.thestar.com/life/health_wel ... w-say.html

the answer, re zinc in diet, is to do the math i'm afraid. if you can create a typical three day 'diet' diary (best case includes food, fluids, meds, supplements, and level of physical activity), including how things are prepared and serving sizes, then it would be possible to get a sense.
here are amounts of zinc for serving sizes of different foods.
http://www.whfoods.com/genpage.php?tnam ... #foodchart
you are aiming for minimum 15, max 40. way better to aim high.
re veg sources, you do need to eat 30% more to actually absorb the stated zinc content per serving.

re brown rice you'll notice it's not on the list. interestingly of all the nutrients lost when brown rice is polished, zinc is least affected. i am still dedicated to brown rice for the sake of all the nutrients that ARE affected by milling.

re asthma, yet another reason for a very close look at both magnesium and zinc. re lyteshow 4-5 servings per day, it makes lots of sense that that would help. you still may not be getting enough of either when food is counted as well.

re lyteshow, if the sources ls salt lake, that will be mag chloride i would think, hence the big chloride numbers on the label.

so 40 servings costs $15 plus tax (US i'm assuming) and lasts 8 days or thereabouts? delivering 40 servings x 40 mgs = 1,600mg of magnesium.

compare orange naturals. a bottle costs me less than CAD $20 taxes in. 60 servings. 180mg elemental mag per capsule. so 60 caps x 180mg = 10,800mg of magnesium. to get that much via lyteshow, you're looking at what a hundred dollars or so.

you would realize similar savings getting your zinc via diet plus a simple zinc citrate supplement if needed.

sheesh i should dissolve some cheap minerals in a few ounces of water and sell it too, would be a lot better off than handing out info for free 7:\ oh, ethics.

so, overall, food sourced mag is the priority, and that's what you need enough for your weight for. and you can use a supplemental form to top up. i think glycinate is definitely sounding more economical. also, there are some protocols which actually recommend glycine for ms specifically.

and yes your basic mag recommendations do not include an added oral daily megadose of d3.
as for how much more needed to accommodate daily 10K oral d3 i am not qualified to judge.

no published trials of long term high dose d3 safety that i have found to date go longer than 6 months. it took well over a year of high dosing d3 (usually at only 4000 iu per day by the way) for the problems to really get bad for me, and i had been low in mag to start with.

if i had to take 10K d3 per day at this point i'd be carefully monitoring both serum calcium and magnesium, as well as serum 25(OH)vitD3, on a seasonal basis to start given that your natural exposure will influence d3 levels over the course of the year.

this is interesting from a non supplement perspective, will have to read when i have time
Production of magnesium from Great Salt Lake, Utah USA
http://digitalcommons.usu.edu/cgi/viewc ... ntext=nrei

other local issues of interest http://archive.sltrib.com/story.php?ref ... l.html.csp

terrineedshelp wrote:I have a pretty healthy, though restricted, diet. I am allergic to gluten and eggs and intolerant of dairy and soy. Plus, I never eat peanuts because my son is allergic.

I eat brown rice on an almost daily basis. I also routinely eat spinach, beef, peas, cashews, dark chocolate, pork, salmon, turkey, and garlic. Do you think I'm getting enough zinc through my diet? I also have asthma, btw, and it is currently uncontrolled even though I'm on a daily steroid and an inhaled COPD med (I don't have COPD and have never smoked, but it has been found to help some asthmatics and has been helping me).

In view of the following article (whether or not there is obesity/overweight considerations in your family), you might consider requesting the vitamin D blood test called the "25-hydroxy D" for BOTH you and your son.

Snoopy is right: Testing is the only way to know if a person's vitamin D serum level is adequate (at least 40-60 ng/mL, according to GrassrootsHealth http://www.GrassrootsHealth.net).

Individual response to the same dosage amount varies widely from person to person. Testing is needed to know if you have 20 ng/mL OR 120 ng/mL in your blood from the same 10,000 IU vitamin D3.

Vitamin D Deficiency Linked to Allergy and Asthma in Obese Children, Teens
By Staff
US Pharmacist, 7/17/2013
US Pharm. 2013;38(7):18.
https://www.uspharmacist.com/article/vi ... eens-41780

Bethesda, MD—Vitamin D deficiency may play a role in the increased risk of asthma and allergies in obese children and adolescents, according to researchers at Walter Reed National Military Medical Center. Of the 86 subjects aged 10 to 18 years, 54 were obese and vitamin D deficient. BMI standard deviations (BMI Z-scores) were calculated, and levels of leptin, adiponectin, and immunoglobulin were measured. Correlations between severity of obesity and adipokine levels and some biochemical measures of allergic disease were significant. The relationship between BMI Z-score and markers of allergic disease appeared to depend on the vitamin D deficiency seen in obese subjects, leading to the conclusion that the increased risk of allergy in obesity may be mediated by vitamin D.

terri, imho i do think your past 10,000 IU per day routine with d3 will have safeguarded you against d3 deficiency. i am making assumptions, but also imagine there has been some informed rationale for the 10K / day regimen. that said, i can imagine you might have been doing this blind based on the '10K per day is a physiological dose' literature. i hope not though!
i really wish studies would stop zeroing in on vit d3 in isolation, without tracking at least a couple of mineral cofactors. cofactors are a huge part of the difference in how one person to the next differs in their dose response. i am a poster child for ok response before working on general nutrient status and HUGE response to an actually lower, but still mega, d3 dose.

jimmylegs wrote:i really wish studies would stop zeroing in on vit d3 in isolation, without tracking at least a couple of mineral cofactors. cofactors are a huge part of the difference in how one person to the next differs in their dose response.

For those who are unaware of the cofactors:
Low cost cofactors for vitamin D
VitaminDWiki
http://www.vitamindwiki.com/tiki-index.php?page_id=1270


Vitamin D Cofactors in a nutshell
http://www.vitamindwiki.com/Vitamin+D+C ... a+nutshell

and as above via http://www.thisisms.com/forum/undiagnos ... ml#p245556

I take the 10k VitD because I was very low before (I can't remember how low) I started taking it, plus I live in WI and get Seasonal Affective Disorder pretty bad. I had SAD when I lived in GA, then moved way north to the land of actual winters. In Feb 2015 my VitD (on 10k) was at 56, but that is the last time I had it tested.

I plan to talk to my doctor about a myriad of bloodwork....but first I have to get her to return my calls! I've been waiting for over a week now for any word on neurology or testing. I know these things take time, but she told me she was going to try to pull some strings to speed things along, so I expected at last an update before now. Can you tell I'm frustrated?

My headache is soooo bad all of the time now, my vision is getting worse, and the brain fog/confusion are at least as bad. As I know you all know, waiting is hard.

hi again, if the doc put you on 10,000 IU d3 per day, without any attention to baseline cofactor status, or therapeutic cofactor intake while high dosing, that high dose d3 on its own could definitely be causing problems.
since you are in the US, your access to private options is actually pretty good, if you have the means and motivation re moving forward while you wait for the doc to connect.

http://www.lifeextension.com/Vitamins-S ... lood-Tests

http://www.lifeextension.com/Vitamins-S ... Blood-Test
http://www.lifeextension.com/Vitamins-S ... Blood-Test (choose serum if you can)

i don't have access to this kind of service where i am, but for others on here who have used such an option, the turnaround time does seem really quick. i would be very surprised if your serum zinc and mag were both an ideal high normal.

terrineedshelp wrote:I take the 10k VitD because I was very low before (I can't remember how low) I started taking it, plus I live in WI and get Seasonal Affective Disorder pretty bad. I had SAD when I lived in GA, then moved way north to the land of actual winters. In Feb 2015 my VitD (on 10k) was at 56, but that is the last time I had it tested.

I plan to talk to my doctor about a myriad of bloodwork....but first I have to get her to return my calls! I've been waiting for over a week now for any word on neurology or testing. I know these things take time, but she told me she was going to try to pull some strings to speed things along, so I expected at last an update before now. Can you tell I'm frustrated?

It is possible to order a 1-time vitamin D test kit from GrassrootsHealth for a $65 fee (+ $5 shipping). This at-home test requires pricking a finger, placing a few drops of blood on the blood spot card, and mailing it in (you get results within a week).
https://www.grassrootshealth.net/proj-welcome/?pr=95284

How to Complete Your Home Vitamin D Blood Spot Test (5 min.)
VitaminDaction Project by GrassrootsHealth



A similar in-home vitamin D test kit is offered by the Vitamin D Council for $50:
https://www.vitamindcouncil.org/testkit/

terri can i ask if you have been using lyteshow per doc's suggestion, or if you came up with that on your own initiative?