This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi All,

I was diagnosed with rrms June of last year (2009) I have recently started Copaxone (3 weeks) and all my neuro ever suggested for me was 4000 units of D3 and 1300mg of calcium daily........I have read through some threads on supplements,as well as checked out some links that members have posted and I feel absolutely STUPID. I don't really understand too much about them, and know I should probably have some tests run to see where I am deficient, but in all honesty I have no idea what to ask for and wouldn't know how to read the results if they were given to me.........................So many of you elders to thisisms seem to know what you're doing.....any advice would be most appreciated

I am also on .15 MG of synthroid daily

PLEASE HELP!!!!

hi s, sorry you're feeling in over your head

k here goes:

get your 25(OH)vitd3, vitamin B12, zinc, and magnesium... and ferritin.. tested, for starters.
uric acid would be a 'nice to know' test also.

make sure to obtain results with units. not just the 'it's normal' party line.

then when you have results let us know and we can help you figure out the next step.

hope that helps!

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

If you're taking D3 and Calcium already, then I think you're pretty much done.

There are all sorts of opinions about various supplements, diets, herbal remedies, etc. that people believe are beneficial, but little evidence or consensus about the details. Even D3 supplementation is mostly speculative as a therapy for MS, though evidence is building that most people could use some supplementation, MS or not.

I take 6000 IU of D3 (based on neurologists advice), plus a multi-vitamin every day, and that's it for supplements. Well, I guess I do drink green tea most days, which some people believe is helpful.

I'm not trying to discourage you from having tests and/or adding some additional supplements, if that's what you want to do, but you really shouldn't get too worried about it. You're not missing any vital parts of your treatment right now.

/Scut

wrong!

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

JL thanks for the support

I would like to have the tests done just for my own peace of mind, as so many things I've read on here suggest additional supplements to be helpful (zinc, magnesium etc) I have written a list of what you posted and will take it to my gp next week

Scut I thank you for your response and perhaps you could also find it to be beneficial to you. I have heard through the grapevine that Jimmylegs is pretty versed on supplements in these parts and if she has taken them for so long, she's proof that it's not doing any harm

you're welcome, s

one small correction - since i've been on this learning curve i have in fact done a few things wrong, for example at one time i was taking high dose vit D3 without properly timing my magnesium intake (which was too low anyway regardless of timing, actually).

the high dose D3 taken simulatneously with low dose mag, caused my magnesium levels to drop off until i had deadly problems with my throat - would get stuck mid-swallow with my airway blocked, unable to complete the swallowing motion. i began mentally preparing for the day i would just sit there and suffocate. that was end of 2007.

luckily, i started separating some of my magnesium supplementation from my D3 intake, which was done on the recommendation of a pharmacist after i had been in for a chest xray due to shortness of breath.

it worked like a charm on my throat, and to my surprise it also fixed my difficulty with breathing. i stopped following the pharmacist's recommendation as soon as it worked, fearing placebo. all the problems returned. started timed magnesium again, was fixed. yay!

at any rate i am happy to be guinea pig if others benefit as a result

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Nothing wrong with that. I had a few extra tests of my own when I first started treatment, just in case there was some easy fix. There's definitely some comfort in knowing you're doing something.


Thanks, but I find most of the arguments for specific supplements to be unconvincing. Supplements are usually (but not always) of little harm except to your wallet, but I'm still waiting for more plausibility and evidence of effectiveness before I add more stuff to my diet.


This last sentence of yours is the real reason I'm replying to this, since I don't really have anything against supplements. Jimmylegs most certainly is not proof that the supplements are doing no harm. I mean, even ignoring the scary suffocation story above, lack of obvious harm is never "proof" of safety. For example, my father smoked for 30 years with no apparent harm, but that certainly doesn't prove cigarettes are safe! And don't forget that radium tonics were once a popular health supplement, too...

/Scut

i think the dangers associated with supplements are by and large known. if you do the research, you find in a lot of cases that potential impacts are associated with ridiculously high megadosing over long, long periods, or lack of knowledge about balancing levels.

patients need to use bloodwork to find out which supplements are needed in their individual case. i can't see the harm in pushing serum levels away from an ms profile and towards a healthy control profile. what is a problem, is doing it blindly and taking things without knowing if you're achieving what you wanted, or overshooting the mark somehow.

for instance, early on i thought it was okay to take lots of B-complex because they are water soluble vitamins. once i bought a new bottle of b100 complex and i didn' t notice that instead of 400 units of B9, it had 1000 units. i started to develop a neuropathic itch. the only thing in my supplement regimen that has changed was the new B-complex, so i read the label more carefully and spotted the 1000 B9. i asked my doctor for a B9 test and the result was 2170, whereas my previous result was 1480. the highest level previously seen at the lab was in the 1700s so i was well out the top of the envelope.

i retired that brand of b-complex my rbc folate normalized again and the itching went away. i have no way to tell if i did permanent damage, but i don't think so, and as far as my ms goes, i don't have relapses so far. i'm just under 5 years in so who knows

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com