hello from northern bc canada

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hello from northern bc canada

Postby Txaamsm32 » Sun Dec 11, 2016 10:46 pm

hello everyone. new here but have read though a few posts. mostly about medications and routines.
im from a small village in the north west coast of british columbia canada :) its beautiful i love it here, i was diagnosed this past summer with MS.
first major hurdle was Optic Neuritis was looking out on the water one day and noticed that my vision was clouded in the corner of my eye. i figured maybe it was a fish scale as i was cleaning fish for jarring the night before. washed my eye out and figured that'd fix it but as the week went on it got worse and i couldn't see anything out of my right eye.
being from a small village we dont have much in the way of doctors or nurses, so i was shipped to the next towns emergency room, they didn't know what was going on, so they sent me to an optometrist, he was at a loss for what was going on and he sent me to a local doctor again same thing, being a big guy he guessed diabetes...so blood work and testing was done all came back with no sign of diabetes. so was shipped along to the next town to see an opthamologist and finally after all that testing he said i had ON and said i may have Ms :-|
was referred to a Neurologist in prince george and went for an mri an more testing and thats when i was diagnosed.
after talking to him about it and what can be done i was devastated to say the least.
he told me there is literally nothing to do to treat MS and all i could do to slow it down was take vast ammounts of Vitamin D and try not to stress and workout more.
I've been dealing with depression since then i was on the cusp of starting a business with friends but when i was diagnosed i pulled out of that venture, and spasticity, the cramping and muscle spasms/twitching is bothersome when i try an sleep or when its warm. (thank god for winter)
I've read alot of posts and blogs of people with MS. and how long did it take you all to come to terms with it?
i see so much positivity and encouragement from people whos symptoms have progressed alot further than mine and i wonder how do you all do it? its inspiring no doubt about it :smile: but its the holidays and im still in the Woe is me phase. when my family an friends see me dealing with the fatigue or spasms/spasticity i just shrug it off an tell them im just getting old to try get a smile out of em.
does exercise really help? the vitamin D? all i was told from my neurologist was those things an avoid stress. and to come back for more MRI's when i feel more symptoms come on.
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Re: hello from northern bc canada

Postby NHE » Mon Dec 12, 2016 12:43 am

Welcome to ThisIsMS.

Txaamsm32 wrote:does exercise really help?

Yes. It's best to maintain your physical capabilities. With MS, we have to fight for the privilege of standing still. If you don't use it, MS may very well someday take it away.

Txaamsm32 wrote:the vitamin D?

Have you had a vitamin D test? If so, do you know the results? If your vitamin D3 level is low, then raising it can have about the same efficacy as several of the CRAB drugs.

Pierrot-Deseilligny et al. 2012 reported that every 10 nmol/L increase in 25-OH-D level, up to 110 nmol/L, was associated with a reduction in the relapse incidence rate of 13.7%.

http://www.ncbi.nlm.nih.gov/pubmed/22783368

A mere 30 nmol/L increase in 25-hydroxy vitamin D3 puts it in the efficacy range of interferon beta1a with a 41% reduction in relapses. The side effects are nonexistent and the cost is spit in a hurricane in comparison.

Note: 110 nmol/L = 44.1 ng/mL. Divide by 2.496 to convert nmol/L to ng/mL.
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Re: hello from northern bc canada

Postby lyndacarol » Mon Dec 12, 2016 8:47 am

Txaamsm32 wrote:im from a small village in the north west coast of british columbia canada :) its beautiful i love it here, i was diagnosed this past summer with MS.
first major hurdle was Optic Neuritis was looking out on the water one day and noticed that my vision was clouded in the corner of my eye. i figured maybe it was a fish scale as i was cleaning fish for jarring the night before. washed my eye out and figured that'd fix it but as the week went on it got worse and i couldn't see anything out of my right eye.
being from a small village we dont have much in the way of doctors or nurses, so i was shipped to the next towns emergency room, they didn't know what was going on, so they sent me to an optometrist, he was at a loss for what was going on and he sent me to a local doctor again same thing, being a big guy he guessed diabetes...so blood work and testing was done all came back with no sign of diabetes. so was shipped along to the next town to see an opthamologist and finally after all that testing he said i had ON and said i may have Ms :-|
was referred to a Neurologist in prince george and went for an mri an more testing and thats when i was diagnosed.
after talking to him about it and what can be done i was devastated to say the least.
he told me there is literally nothing to do to treat MS and all i could do to slow it down was take vast ammounts of Vitamin D and try not to stress and workout more.
I've been dealing with depression since then i was on the cusp of starting a business with friends but when i was diagnosed i pulled out of that venture, and spasticity, the cramping and muscle spasms/twitching is bothersome when i try an sleep or when its warm.
Welcome to ThisIsMS, Txaamsm32.

I echo the question from NHE, "Have you had a vitamin D test?" I do not know what services are available in "a small village in the north west coast of british columbia canada." Perhaps a lab test is difficult to obtain.

Here in the US we have another option:

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
https://www.youtube.com/watch?v=By4wQYV-UzU

GrassrootsHealth has a worldwide project on vitamin D deficiency; I assume they have a way to accommodate different currencies in other countries. I think it is important for you to have this "25-Hydroxy D" blood test.

It has long been known that vitamin D levels are low in Canada:

Are you getting enough vitamin D?
Martin Mittelstaedt
The Globe and Mail, December 19, 2007
http://www.theglobeandmail.com/life/are ... cle700167/

"Regardless of racial background, people living in Canada are among those at the highest risk in the world for vitamin D insufficiency because of the country's northern latitude. It is impossible, even in southern parts of Canada, to make the vitamin in skin for about six months each year during the fall and winter because the sunlight is too feeble, so the amount a person is able to build up during the summer is of critical importance."

Lack of the sunshine vitamin raises risk of MS: Canadian study
by Martin Mittelstaedt
The Globe and Mail, September 19, 2008
http://www.theglobeandmail.com/news/nat ... le1061838/


Optic neuritis…

Preventive effect of vitamin D3 supplementation on conversion of optic neuritis to clinically definite multiple sclerosis: a double-blind, randomized, placebo-controlled pilot clinical trial. (2013)
http://www.ncbi.nlm.nih.gov/pubmed/23250818

Multiple sclerosis (MS) presents with optic neuritis (ON) in 20 % of cases and 50 % of ON patients develop MS within 15 years. In this study, we evaluated the preventive effects of vitamin D3 administration on the conversion of ON to MS (primary outcome) and on the MRI lesions (secondary outcome) of ON patients with low serum 25 (OH) D levels. Thirty ON patients (15 in each of 2 groups, aged 20-40 years) with serum 25 (OH) D levels of less than 30 ng/ml were enrolled in a double blind, randomized, parallel-group trial. The treatment group (cases) received 50,000 IU of vitamin D3 weekly for 12 months and the control group (controls) received a placebo weekly for 12 months. Finally, the subsequent relapse rate and changes in MRI plaques were compared between the two groups. Risk reduction was 68.4 % for the primary outcome in the treatment group (relative risk = 0.316, p = 0.007). After 12 months, patients in the treatment group had a significantly lower incidence rate of cortical, juxtacortical, corpus callosal, new T2, new gadolinium-enhancing lesions and black holes. The mean number of total plaques showed a marginally significant decrease in the group receiving vitamin D3 supplementation as compared with the placebo group (p = 0.092). Administration of vitamin D3 supplements to ON patients with low serum vitamin 25 (OH) D levels may delay the onset of a second clinical attack and the subsequent conversion to MS.

Depression… People with low vitamin D are predisposed to depression.

Cramping and muscle spasms… Low vitamin D affects muscle function.

Please try to get the vitamin D test AND get your own copy of the test results so that you have the actual numbers.
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Re: hello from northern bc canada

Postby Txaamsm32 » Mon Dec 12, 2016 12:52 pm

thank you for the info :) im not really sure if they tested for it. they did submit me to 4-5 blood tests since may. so its possible they tested for it. they have me on 3000IU a day of vitamin D.
just on my way to my appointment with a visiting nurse to discuss Spasticity and how to deal with it. last time they gave me muscle relaxers but after a few nights of taking it i found it hard to breathe. and was told to stop taking them immediately. hopefully can find something else for it. again thank you for the information.
hope you all are doing well and all have a very good day
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Re: hello from northern bc canada

Postby lyndacarol » Mon Dec 12, 2016 3:05 pm

Txaamsm32 wrote:im not really sure if they tested for it. they did submit me to 4-5 blood tests since may. so its possible they tested for it. they have me on 3000IU a day of vitamin D.
just on my way to my appointment with a visiting nurse to discuss Spasticity and how to deal with it. last time they gave me muscle relaxers but after a few nights of taking it i found it hard to breathe. and was told to stop taking them immediately. hopefully can find something else for it.
3000 IU of vitamin D a day sounds like a lot, but Dr. Robert P Heaney has stated that 3000 to 5000 IU a day is what a healthy man will use each day. If you start with a deficiency, 3000 IU will not CORRECT a deficiency.

Only a blood test will tell you if you are deficient. The test is not part of any standard blood test panel – it must be specifically requested by your doctor. Is it possible to call the doctor who ordered your blood work – or even possibly to call the lab – and check to see if this test was done?

Regarding spasticity… jimmylegs is the "magnesium guru" here at ThisIsMS – she is best to handle this topic. Magnesium is necessary for many functions in the body, one of which is proper muscle function. Many people have found improvement in their muscle spasms by taking an increased amount of magnesium. MG is a natural muscle relaxer, which has no negative side effects that I am aware of. In my opinion, there is no blood tests available to determine if a body has has adequate amount of magnesium. If, by chance, you eat enough foods to get adequate magnesium, taking more will not harm you – any excess that your body does not need will be passed out in body waste material.

Magnesium expert, Dr. Carolyn Dean, author of The Magnesium Miracle, believes it is impossible to get adequate magnesium in the diet alone because of modern farming practices and soil depletion. She recommend supplementation for most.

There are many forms of magnesium; jimmylegs recommends magnesium glycinate, she warns of laxative effect in taking lots of magnesium oxide. Magnesium threonate is a recent addition to the list of magnesium forms.

By the way, magnesium is one of several cofactors with vitamin D. Vit D requires magnesium to convert into its active form. If you take large amounts of vitamin D, you definitely need to take more magnesium.
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Re: hello from northern bc canada

Postby Txaamsm32 » Mon Dec 12, 2016 4:15 pm

had an hour long talk with the nurse and i do have magnesium coming over on the next ferry :) should have it an more vitamin D on wednesday. and another type of relaxant to see if that helps. thank you so much for the links i've been doing my best to study up on all of this an try an get a better understanding of it all.
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Re: hello from northern bc canada

Postby NHE » Mon Dec 12, 2016 10:45 pm

Txaamsm32 wrote:had an hour long talk with the nurse and i do have magnesium coming over on the next ferry :) should have it an more vitamin D on wednesday. and another type of relaxant to see if that helps. thank you so much for the links i've been doing my best to study up on all of this an try an get a better understanding of it all.


Make sure that you're taking the D3 form of vitamin D and not the D2 form. The D3 form is known as cholecalciferol. It's better absorbed than D2 and also more effective.

Vitamin D2 is much less effective than vitamin D3 in humans.
J Clin Endocrinol Metab. 2004 Nov;89(11):5387-91.

    Vitamins D(2) and D(3) are generally considered to be equivalent in humans. Nevertheless, physicians commonly report equivocal responses to seemingly large doses of the only high-dose calciferol (vitamin D(2)) available in the U.S. market. The relative potencies of vitamins D(2) and D(3) were evaluated by administering single doses of 50,000 IU of the respective calciferols to 20 healthy male volunteers, following the time course of serum vitamin D and 25-hydroxyvitamin D (25OHD) over a period of 28 d and measuring the area under the curve of the rise in 25OHD above baseline. The two calciferols produced similar rises in serum concentration of the administered vitamin, indicating equivalent absorption. Both produced similar initial rises in serum 25OHD over the first 3 d, but 25OHD continued to rise in the D(3)-treated subjects, peaking at 14 d, whereas serum 25OHD fell rapidly in the D(2)-treated subjects and was not different from baseline at 14 d. Area under the curve (AUC) to d 28 was 60.2 ng.d/ml (150.5 nmol.d/liter) for vitamin D(2) and 204.7 (511.8) for vitamin D(3) (P < 0.002). Calculated AUC(infinity) indicated an even greater differential, with the relative potencies for D(3):D(2) being 9.5:1. Vitamin D(2) potency is less than one third that of vitamin D(3). Physicians resorting to use of vitamin D(2) should be aware of its markedly lower potency and shorter duration of action relative to vitamin D(3).


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In addition, it's best to take your D3 with a meal that includes fat. This can increase the absorption by 32%. Since first reading this, I switched to taking my D3 with dinner.


Dietary fat increases vitamin D-3 absorption.
J Acad Nutr Diet. 2015 Feb;115(2):225-30.

    BACKGROUND: The plasma 25-hydroxyvitamin D response to supplementation with vitamin D varies widely, but vitamin D absorption differences based on diet composition is poorly understood.

    OBJECTIVES: We tested the hypotheses that absorption of vitamin D-3 is greater when the supplement is taken with a meal containing fat than with a fat-free meal and that absorption is greater when the fat in the meal has a higher monounsaturated-to-polyunsaturated fatty acid ratio (MUFA:PUFA).

    DESIGN: Open, three-group, single-dose vitamin D-3 comparative absorption experiment.

    PARTICIPANTS/SETTING: Our 1-day study was conducted in 50 healthy older men and women who were randomly assigned to one of three meal groups: fat-free meal, and a meal with 30% of calories as fat with a low (1:4) and one with a high (4:1) MUFA:PUFA. After a 12-hour fast, all subjects took a single 50,000 IU vitamin D-3 supplement with their test breakfast meal.

    MAIN OUTCOME MEASURES: Plasma vitamin D-3 was measured by liquid chromatography-mass spectrometry before and 10, 12 (the expected peak), and 14 hours after the dose.

    STATISTICAL ANALYSES PERFORMED: Means were compared with two-tailed t tests for independent samples. Group differences in vitamin D-3 absorption across the measurement time points were examined by analysis of variance with the repeated measures subcommand of the general linear models procedure.

    RESULTS: The mean peak (12-hour) plasma vitamin D-3 level after the dose was 32% (95% CI 11% to 52%) greater in subjects consuming fat-containing compared with fat-free meals (P=0.003). Absorption did not differ significantly at any time point in the high and low MUFA and PUFA groups.

    CONCLUSIONS: The presence of fat in a meal with which a vitamin D-3 supplement is taken significantly enhances absorption of the supplement, but the MUFA:PUFA of the fat in that meal does not influence its absorption.
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Re: hello from northern bc canada

Postby jimmylegs » Wed Dec 14, 2016 7:58 am

glad to hear you have some mag coming in to go with that vit d3 :)
please be aware that not all magnesium is created equal.
some sources recommend 7-10mg per kg, so ballparking 80kg that's 560-800mg per day.
if you try that with magnesium oxide, stay close to the toilet because you'll need it.
if i personally were to try that high a dose using magnesium glycinate, i'd be a wet noodle.
i have spent enough years building up magnesium in my tissues and in my diet that more than 100mg mag glycinate per day in powder capsule form is too much. takes some fine tuning!
in general, when working to keep yourself out of the ms risk zone in nutritional terms, there are a number of things to consider besides vit d3, b12 and magnesium.
a high quality multivitamin/multimineral could be a very useful addition to your regimen :)
then over time, examining your day to day diet against health canada recommendations to see which gaps need to be addressed.
enjoy the reading! imho if i had to get a crappy dx, the learning curve was the best part of a bad deal :D
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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