Which supplements to use for RR MS? Someone help!

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Which supplements to use for RR MS? Someone help!

Postby Jenmen0304 » Sat May 11, 2013 6:50 am

I was diagnosed Mothers Day weekend of 2012...yes Happy Mothers Day to me :/ My symptoms have been minimal (tingling in right arm, numbness in toes, occasional burning in thighs and back spasms) My doctor in May of 2012 wrote me a script for Avonex injections. My daughter at the time was 2 and my hubby and I decided that this was our last chance to extend our family and I decided to hold off on any meds and get pregnant. So I did, the very next month. Well here I am 11 months later and I have another beautiful, healthy baby girl. Upon returning to my neurologist, they told me that they strongly recommend Tysabri (I just went for a bloodiest to see if I had the JCVirus and don't ave results yet.)

When I found this forum I was extremely pleased. A lot of information that , to be honest, I found more helpful than my neurologist.

****I'm really interested in starting a daily supplement regimen. I have been told by my neurologist to take 1,000iu of Vitamin D. I don't think that's enough!!

So, with all that being said- can someone (maybe jimmylegs) please please please help with some recommendations of which vitamins have worked for them and how much I should be taking daily?? I'm thinking at least 10,000iu of D3???!!!

What about b12?? What about LDN(can my doc write me a script?)?

I live in NYC and as you are aware winters are cold and gloomy and I don't get much sun... In Summer months I am usually poolside daily and getting lots of sunlight ;) I'm a Teacher-gimme a break!

Someone help! I am going May 19th back to neurologist: wants me to choose between Tysabri, Avonex, and Tecfidera... I believe I may start one of these, but would like to do supplements on my own. :)
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Re: Which supplements to use for RR MS? Someone help!

Postby jimmylegs » Sat May 11, 2013 10:26 am

hi jen :)


good that the neuro suggested d3.. BUT vit d3 spent 50-odd yrs building up in research to finally make it into bumped up mainstream recommendations in the last 5 yrs or so, at best.

the interactions that ppl need to understand are still a ways away from working their way into the mainstream. in some cases even the research is still pending. or at least if it has been done already, I have not been successful at finding it!

this is all by way of saying WHOA on the 10,000IU d3 daily idea. could have some unpleasant consequences.

for supplements, how much you take really depends on a few factors, ie what is your diet, and what is your current nutrient status for a bunch of things. is there any remote chance you can take some research abstracts to one of your docs to support a request for nutrition bloodwork?

also, in terms of priorities I would put d3 and b12 second to zinc assessment and likely supplementation. zinc status affects ability to absorb/utilize both vit d3 and vit b12. also you will have gone through a good chunk of your zinc supplies having two kids. plus are you breastfeeding? that's a nutrient drain too, of course. are you on anything like an am/pm multi for new moms? that needs to be factored in also. details details :) not saying no to b12 and d3, just saying that zinc repletion is a pretty logical step one.

also have you had a read through this yet? regimens-f22/topic2489.html
towards the end there's a spot about my regimen that includes doses.

please, if you can, get some pro medical support for the nutrient side of things. having some test info available is much safer than flying blind. it all comes back 'normal' so the mainstream dismiss it. but you need to be very skeptical about the normal range and make sure your levels are OPTIMAL.

hope that helps :D
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Re: Which supplements to use for RR MS? Someone help!

Postby CureOrBust » Sat May 11, 2013 8:05 pm

All of what JL said above. And to be clear, for the B12, either get the regular injections 8O or use a sub-lingual MethylCobalamin; most multi-vits use the other form.

Also, I think JL will agree, that a blood test of all your levels should help you understand where you are lacking. If the zinc does not help your uric acid, also consider some Inosine.

As for the LDN, your GP should be able to write you a script to take it to a compounding pharmacy for dispensing.

JimmyLegs wrote:this is all by way of saying WHOA on the 10,000IU d3 daily idea. could have some unpleasant consequences.
What are the consequences of too much D3?
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Re: Which supplements to use for RR MS? Someone help!

Postby jimmylegs » Sat May 11, 2013 9:04 pm

i do definitely agree re testing.

re consequences of too much d3, (aside from the known toxicity at much higher intakes) for me it was serious magnesium depletion resulting in such bad dysphagia that i fully expected to die.

one day by chance a pharmacist told me that i was not taking enough magnesium for my d3 intake, and that i was timing it badly. i followed the pharmacist's suggestion and got better in a couple days. then i stopped taking the magnesium and the problem came back. then i started taking magnesium again, paying closer attention. i could feel it kick in every time, for ages.

it took a years to rebuild my magnesium stores so that i could go for a few days without a supplement. and now when i take it, i don't get any distinctive 'aha, there it is' moments. unless I've let it slide and end up needing it for some pain or other.

i suspect it may have other consequences but i can't even find the research on the magnesium effects. don't know how the pharmacist knew what to tell me.
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Re: Which supplements to use for RR MS? Someone help!

Postby Jenmen0304 » Fri May 17, 2013 2:25 pm

When I went to my neurologist and TOLD him what supplements I was taking he told me he was impressed.

My bloodwork came back good, just D was low. I told him well I started 50 B complex, 10,000 iu D3...etc and he was pleased. Told me not to take more than 50,000 D3 a week.

I signed the dotted line to take Tysabri. I have one lesion on my spine (and numerous on brain). I have changed diet and am implementing a workout regimen but I needed an extra ally too.

Hope everyone is feeling good today

Jennifer
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