This Is MS Multiple Sclerosis Knowledge & Support Community

an interesting study:

Arch Pediatr Adolesc Med. 2008;162(6):505-512.
Prevalence of Vitamin D Deficiency Among Healthy Infants and Toddlers

Results The prevalence of vitamin D deficiency (=20 ng/mL) [JL edit: 50nmol/L] was 12.1% (44 of 365 participants), and 146 participants (40.0%) had levels below an accepted optimal threshold (=30 ng/mL) [JL edit: or 75 nmol/L - musculoskeletal optimal as opposed to immune optional]... breastfeeding without supplementation among infants and lower milk intake among toddlers were significant predictors of vitamin D deficiency. In vitamin D–deficient participants, 3 participants (7.5%) exhibited rachitic changes on radiographs, whereas 13 (32.5%) had evidence of demineralization.

Conclusions Suboptimal vitamin D status is common among otherwise healthy young children. Predictors of vitamin D status vary in infants vs toddlers, information that is important to consider in the care of these young patients. One-third of vitamin D–deficient participants exhibited demineralization, highlighting the deleterious skeletal effects of this condition.

where does your doc stand on this issue ww? i know my little nephew's doc has put him on d3 but i don't know how much or whether he's been tested. or whether his mom's been tested for that matter...

Thanks for the replies.

I feel a bit at sea because my GP has decided I'm bonkers.
His last piece of advice was "you're a perfectly healthy young woman, so get on with things". Eh, pardon? - I have MS, asthma, ezcema, coeliac disease...and he thinks I'm perfectly healthy. I think he is annoyed because I asked him could he check my ANA again as there is a familiy history of Lupus. And he seemed irritated when I asked him to check Vit D/calcium levels too. I have seen this GP for 10 years and to be honest there are very few GP's that would be happy about taking me on I suspect.

I find that most GP's are clueless about this level of information on MS and research around it and docs don't like to be told stuff. They like to be the experts. They are fine for colds/coughs kind of illness.

My son has a differenet GP so perhaps I could ask him to test DS soon for vit d levels....but again I feel like I'm proposing something that is not well known.

that's a shame ww. i know it's catching on some places but it's certainly not status quo yet.
you are right, sometimes GPs seem to be there to assess which specialist you should be referred to when things go too far off the rails. i did have to teach my doc but she is very receptive. there was a point quite early on where my questions got to a certain level and she said straight up to me that i probably knew more about ms at that stage than she did.
your doc sounds quite a lot like my childhood family doc. when i moved back 'home', i wasn't even sick at the time but i went to lengths to ensure i didn't get slotted back in with that previous doc. so glad i went to the trouble!
i don't know if it would help in your case now, but for me in the start i always went to my doc armed with research abstracts and ask for her thoughts before stating my case. at least, i used to - she is used to it now so i don't have to work as hard. although she's taking a leave of absence at the moment so i may have to do a little extra pedaling around her stand-in!
maybe if you try out a few other docs that could help? is that an option for you?

WW--With ALL the research on D and new reports on suspected links to MANY conditions coming out every day, I think doctors are hearing requests for D level checks from many people--even parents for their children. Because you have the MS diagnosis is no reason you should not be treated the same as these others. With the suspected connection between low D levels and MS, your request may be MORE justified than others'!

Good discussion people

WW

While I consider it very important to have your children on adequate vitamin D you should try to get your post exacerbation affairs in order. Once you are back to functioning well it is worthwhile corroborating the mumbo jumbo from internet folk such as myself with a medical practitioner.

Bear in mind, as jimmy points out, her knowledge surpassed that of her GP so watch out for unlearned doctors who dispense poor advice based on their ignorance and or condescending attitude.

The medical community has much to learn about vitamin D so you have to factor in the absence of knowledge with you own expertise. The internet offers much (often too much!) well referenced and documented information to peruse. This the same stuff medical practitioners access for their own use.

Direct-MS offers a wealth of articles and I can offer, via personal email, the latest recommendations for intake amounts by leading vitamin D researchers such as VITAMIN D: A Growing Perspective whose abstract is below:

Vitamin D deficiency has been widely reported in all age groups in recent years. Rickets has never been eradicated in developed countries, and it most commonly affects children from recent immigrant groups. There is much evidence that current vitamin D guidelines for the neonatal period, 5–10 μg (200–400 IU)/day, prevent rickets at the typical calcium intakes in developed countries. The annual incidence of vitamin D-deficiency rickets in developed countries ranges between 2.9 and 7.5
cases per 100,000 children. The prevalence of vitamin D deficiency in mothers and their neonates is remarkable, and the results of one study suggest that third-trimester 25-hydroxyvitamin D (25(OH)D)
is associated with fetal bone mineral accrual that may affect prepubertal bone mass accumulation. Beyond infancy, the evidence indicates that 5 μg (200 IU)/day of vitamin D has little effect on vitamin D status as measured by the serum 25(OH)D concentration. Two randomized clinical
trials show that higher vitamin D intake improves one-year gain in bone density in adolescent girls. The functions of vitamin D extend beyond bone to include immune system regulation and antiproliferative
effects on cells. Early life vitamin D inadequacy is implicated in the risk of bone disease, autoimmune disease, and certain cancers later in life; however, long-term interventional studies do not exist to validate the widespread implementation of greater vitamin D consumption. Here we
review the available data concerning vitamin D status and health effects of vitamin D in pregnancy through to and including adolescence.

Keep in mind the disease type 1 diabetes is often recognised in children because autoimmunity can begin early in life and the pancreas has so few tissue that needs to be damaged before the disease is recognised. MS however requires much more damage to greater amount of tissue and is thus diagnosed later in life. Ergo there exists more research into vitamin D and essentially fatty acids (omega 3) in children with type 1 diabetes than children with MS.

The two diseases have been identified as having the same disease process so it makes good sense to use the information regarding type 1 diabetes and children and apply it to your child. For instance the Finns found that 2,000IU/d via cod liver oil in infants resulted in 80% less type 1 diabetes. Wow. Below is a clip from Vitamin D and type 1 diabetes mellitus:state of the art at Direct-MS.

Vitamin D intake and type 1 diabetes prevention The intake of vitamin D, either as a supplement or via food, has been the subject of recent studies examining populations with a high risk for type 1 diabetes. Hypponen et al. found a significantly reduced risk of 0.22 for type 1 diabetes in a birth-cohort study when high-dose vitamin D supplementation (O50 mg dK1, 2000 U dK1) was given regularly or irregularly [56]. By contrast, those children with
suspected rickets during the first year of life had a threefold increased risk of developing type 1 diabetes during later life.
Similarly, increased vitamin D intake during pregnancy significantly reduced b-cell autoimmunity in offspring as detected by islet autoantibodies [57]. However, this effect was restricted to vitamin D intake from food. In a Norwegian study, the use of cod liver oil
either during pregnancy or in the first year of life was associated with a lower incidence of type 1 diabetes [58]. Whether this was the result of the content of vitamin D or long-chain n-3 fatty acids (or a combination) merits further investigation [59]. Furthermore, a EURODIAB (European Community Concerted Action Programme in Diabetes) subgroup multicentre study of cases and controls found that the risk for type 1 diabetes was significantly reduced in countries
with vitamin D supplementation during childhood [60].

I apologise for being so verbose but in closing please be observant of the correlation between cow milk proteins and MS and type 1 diabetes and the identification of immune response to dairy proteins in populations with MS and type 1 diabetes(see above in my initial post). As a "good" parent we've duped into believing milk is good for children so if you are using formula than I feel it is incumbent to offer the protective vitamin D (and calcium and mag) and essential fatty acids to counteract the causal aspects.

lyndacarol

It is interesting that you mention everybody and their dog wanting to get their vitamin D levels assessed. Here in the land of cancer and autoimmune disease (Calgary, Canada)the medical laboratories have been inundated with requests for assessments.

When I first embarked on having my own levels checked 5 years ago:
-the labs would only assess batches every two weeks because it was such an uncommon request
-the doctor-issued form for a lab request didn't have a category for serum vitamin D testing so my doc wrote it in by hand
-the recommended upper limit of serum D was 80 nmol/L which is today the recommended LOWER limit

The times they are a changin'

Cheers
Nick

Speaking only from personal experience I don't think MS is caused by a vitamin D deficit--or at the very least it's only one of many different possible causes. I grew up drinking lots of milk which, at least in the US, has a reasonable amount of Vit D added PLUS I spent almost all of my time outside yet I still have MS. I honestly feel that I grew up in a very nutritionally and physically desirable environment. The only thing that made my childhood rough was multiple family members whom I was very close to passing away over the span of 3 years, I know I'm still emotionally scarred from that.

I'm more of the school that it's either a genetic defect of some kind, set off by a virus/bacteria, or exposure to some type of chemical or microbial. Just my two cents if it's even worth that much.

MattB wrote:Speaking only from personal experience I don't think MS is caused by a vitamin D deficit--or at the very least it's only one of many different possible causes. I grew up drinking lots of milk which, at least in the US, has a reasonable amount of Vit D added PLUS I spent almost all of my time outside yet I still have MS. I honestly feel that I grew up in a very nutritionally and physically desirable environment. The only thing that made my childhood rough was multiple family members whom I was very close to passing away over the span of 3 years, I know I'm still emotionally scarred from that.

I'm more of the school that it's either a genetic defect of some kind, set off by a virus/bacteria, or exposure to some type of chemical or microbial. Just my two cents if it's even worth that much.

I don't think it is as simple as that Matt.

For the mostpart, MS = genetic susceptibility+causal factors+deficiency in protective factors. Milk proteins have been shown to be causal, the vitamin D content of milk is much too low to be immunoregulatory and many parts of the US have lengthy vitamin D winters.

A viral and or bacterial trigger is plausible to initiate the disease process but MS is characterised by repeated immune actions against self over prolong periods. Chronic antigen exposure from a viral/bacterial presence over decades is difficult to justify for the majority of people with MS whereas dietary proteins can easily fit this motif.

Cheers
Nick

I don't think 20 minutes sunshine per day at the noon can cause you any cancer at all, probably they protect you from it!

MattB--I found your contribution much more valuable than two cents!

Speaking only from personal experience I don't think MS is caused by a vitamin D deficit

This is my opinion too after a childhood in the sun, excellent diet (but with TOO many carbohydrates), recently taking 8000IU daily for a year and a half and seeing no change in condition (followed by a year of 6000IU daily for a year).

This site works best if members feel free to offer ideas in a welcoming atmosphere--no matter how unconventional (as the insulin hypothesis). Did I ever tell you my other theory--that MS is caused by wearing blue jeans?

lyndacarol wrote:MattB--I found your contribution much more valuable than two cents!

Speaking only from personal experience I don't think MS is caused by a vitamin D deficit

This is my opinion too after a childhood in the sun, excellent diet (but with TOO many carbohydrates), recently taking 8000IU daily for a year and a half and seeing no change in condition (followed by a year of 6000IU daily for a year).

This site works best if members feel free to offer ideas in a welcoming atmosphere--no matter how unconventional (as the insulin hypothesis). Did I ever tell you my other theory--that MS is caused by wearing blue jeans?

I also question this theory because there are millions of Muslim men and women who have had their bodies covered from the sun since birth and to my knowledge Muslims are not topping the list of MS patients.

I seriously doubt if they have taken Vit D capsules since birth either.

One thing to remember is that the Vitamin D theory is just that, a theory. It has not been proven, just conjectured.

gwa

remember folks we are not talking about the be all and end all decisive cause of MS with vitamin D3 status.
a combination of different factors are likely involved, and different patients' ms may be a series of different subgroups once we get it all figured out.
matt have you had your d3 level tested? i would have said mine was fine too, before the bloodwork. not so much, in hindsight.
as far as human populations and ms risk, suboptimal vitamin d3 status and ms are certainly linked, and dark skin plus covered skin are at increased risk of d3 deficiency. but still it's only one piece of a complex puzzle.

lyndacarol wrote:MattB--I found your contribution much more valuable than two cents!

This is my opinion too after a childhood in the sun, excellent diet (but with TOO many carbohydrates), recently taking 8000IU daily for a year and a half and seeing no change in condition (followed by a year of 6000IU daily for a year).

This site works best if members feel free to offer ideas in a welcoming atmosphere--no matter how unconventional (as the insulin hypothesis). Did I ever tell you my other theory--that MS is caused by wearing blue jeans?

First off, thanks!

I lived in east-central Pennsylvania where it was only winter for 3 months basically and I spent all my summers outside playing. In addition to the milk drinking I had plenty of tuna, salmon, and eggs.

jimmylegs, no I've still not been back to the neuro to ask for the orders for the bloodtest. Guess I could call if I really wanted to.

Just to pick up this thread again...
I had posted about the relevance of this and my little son, now 8 months old.
I found the following authoritative advice and have double checked this:
http://www.fsai.ie/news/press/pr_07/pr20070516.asp

I am giving my son the RDA of Vitamin D on the advice of the Food Safety Authority of Ireland, a government agency. I have also scheduled a vitamin d test for him with his GP so we can see if he is deficient and I am going back to my GP next week for my repeat test too.

Although, like previous posters, I don't think vit D deficiency is the sole cause I know that personally I had a relapse that made me hit EDSS 9 the first summer I worked indoors. Previous to that I had be an outdoor worker and had winter and summer sun exposure. First office job and I developed MS...or at least it flared up severely after 8 months indoors.

From the ECTRIMS website:

Cyclops

A Phase I/II dose-escalation trial of oral vitamin D3 with calcium supplementation in patients with multiple sclerosis
J. M. Burton1; S. Kimball2; R. Vieth2; A. Bar-Or3; H. Dosch4; L. Thibault5; S. Kilborn5; C. D'Souza6; R. Cheung4; M. Ursell7; P. O'Connor1
1. St. Michael's Hospital, Toronto, ON, Canada.
2. Mount Sinai Hospital, Toronto, ON, Canada.
3. Montreal Neurological Institute, Montreal, QC, Canada.
4. Hospital for Sick Children, Toronto, ON, Canada.
5. McGill University, Montreal, QC, Canada.
6. University of Toronto, Toronto, ON, Canada.
7. Etobicoke General Hospital, Etobicoke, ON, Canada.



Increasing distance from the equator, low UV radiation and low serum 25-hydroxyvitamin D [25(OH)D] are associated with increased multiple sclerosis (MS) prevalence and risk. While this relationship provides insight into prevention, it begs the question, ‘Is vitamin D3 (VD3), known to have immunoregulatory properties, beneficial in established MS?’ To answer this, a safe, effective dose must be determined.

To characterize the safety profile of high-dose oral VD3 in MS.

A prospective controlled 52-week trial matched MS patients for demographic and disease characteristics, randomizing them to treatment or control groups. Treatment patients started VD3 at 4000 IU/day and escalated over 28 weeks to 40 000 IU/day. This was followed by maintenance with 10 000 IU/day for 12 weeks, 4000 IU/day for 8 weeks and a 4-week wash-out, translating into roughly 14 000 IU/day over 52 weeks. Calcium (1200mg/day) was given throughout the trial. The primary endpoint was mean change in serum calcium in treatment patients at each VD3 dose, and a comparison of calcium between treatment and control groups. Secondary endpoints included 25(OH)D, urine calcium/creatinine (Ca/Cr) and PTH. Cytokines, lymphocyte response and matrix metalloproteinase-9 were also measured, as were Expanded Disability Status Scale (EDSS) and relapses.

Forty-nine patients were enrolled (25 treatment, 24 control) with mean age 40.5 years (21–54 years), EDSS 1.34 (0-6.0) and 25(OH)D 78nmol/l (38–154). No abnormalities or differences in serum calcium, urine Ca/Cr or PTH occurred, nor were there differences in calcium between groups. Despite a maximum mean 25(OH)D of 413nmol/l (66–729), no significant clinical or biochemical adverse events occurred. A greater proportion of treatment patients had stable/improved EDSS vs. control patients (p=0.018). Treatment patients also had fewer relapses and a greater reduction in relapse rate vs. controls. Immunological data will be presented.

High-dose VD3 (~10 000 IU/day, possibly higher) in MS is safe and tolerable, with evidence of clinical improvement.

Edit...
just reread the thread and noticed NHE posted the article last June. There's been alot of press on vit. D in the past few months-


"Exactly how low vitamin D levels might contribute to heart problems and deaths from other illnesses is uncertain, although it is has been shown to help regulate the body's disease-fighting immune system, he said."

Thanks for the links guys. That quote from the article is interesting. We DO have research linking vitamin D to endothelial dysfunction.

Many doctors now understand that vitamin D deficiency leads to oxidative stress, artherosclerosis, and heart disease. Vitamin D supplementation improves lipid peroxidation and heals the endothelium.
http://www.endocrine-abstracts.org/ea/0 ... 14p275.htm
http://ajpheart.physiology.org/cgi/cont ... 116.2008v1

This is no longer a mystery...the endothelium connects every system in the body, from vasculature to the blood brain barrier. And vitamin D supplementation can help heal breeches in this system. The institute's daily rec. is WAY too low...we're doing 4,000IU daily, and the ECTRIM study shows 10,000IU is safely tolerated.
AC