Newbie here, 16 years with MS

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Newbie here, 16 years with MS

Postby PaBuggles » Tue Jul 03, 2012 9:07 am

Hi there, I'm Paul and I live in Ireland with my wife and two kids (8 & 4). i was diagnosed with RRMS 16 years ago today, just 20 years of age. About 8 years ago, my diagnosis changed to SPMS. The only medications I'm on are Lioresal for muscle spasms and vitamin D supplements. I never responded well to any of the interferon, and was not considered a suitable candidate for Tysabri.

My main symptoms are poor balance, reduced mobility ( I need a wheelchair for loong trips), fatigue and muscle spasms. Very recently I made changes to my diet to see what effects this has, and I'm feeling slightly better already. I have to admit, my diet up to that point consisted mainly of biscuits and Pepsi. Breakfast cereals would usually have two tablespoons of sugar added to them, and I would put a plentiful amount of salt on my dinners. For the past month now, I've been eating more fruits and vegetables and have cut out sugary food and drink, salt and as many processed foods as I can. I'm hoping this works, because I've lost faith in the medical profession and have felt very isolated for the past couple of years.

I hope to get to know people here and share thoughts and ideas on the various treatments available.

Take care,
Paul
Visit my MS blog http://pabuggles.blogspot.ie
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Re: Newbie here, 16 years with MS

Postby jimmylegs » Tue Jul 03, 2012 9:24 am

welcome to the forum paul! glad to hear you've started to feel better with some healthier food in the mix!
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: Newbie here, 16 years with MS

Postby FLJhawk » Tue Jul 03, 2012 1:59 pm

I am sure it will make you feel better, and I hope it will help your MS.

Are you taking vit D3, magnesium, zinc, malic acid, etc? And you might want to ask your doc about LDN. Many don't know about it, or how to prescribe it, but you can do your research or ask for help here.

Good luck.
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Re: Newbie here, 16 years with MS

Postby PaBuggles » Wed Jul 04, 2012 3:56 am

Thanks for the welcome guys. I am taking vitamin D3 supplements, as prescribed by my doctor. I'm also taking cod liver oi tablets to get more omega-3 into my diet, and this also includes vitamin D. I'm not taking the other supplements, though, and I haven't heard of LDN. What is that exactly? I'm going to see my neurologist next week, and I might ask her about it then.

Incidentally, I've heard a great way to get magnesium is simply to take regular epom salt baths. It would also give me more time for relaxation and meditation.
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Re: Newbie here, 16 years with MS

Postby jimmylegs » Wed Jul 04, 2012 6:03 am

hiya :) how much vit d3 and cod liver oil do you take per day? and yes - epsom salts baths are a good way to absorb some extra magnesium. just be careful to follow the directions (more is not necessarily better). sorry i can't find the relevant study easily, or i'd link you up to it!
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: Newbie here, 16 years with MS

Postby PaBuggles » Thu Jul 05, 2012 9:29 am

I take two Calcichew D3 Forte tablets (500mg) each day as prescribed by my neurologist. Having looked more closely at the cod liver oil capsules (of which I also take two daiily) there are only trace amounts of vitamin D in them (25 micrograms) and 100mg of omega-3 oil.
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Re: Newbie here, 16 years with MS

Postby FLJhawk » Thu Jul 05, 2012 10:21 am

There is a lot of info here on LDN, and you can google it. I think this site, and/or maybe another MS site, has a whole section on LDN.
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Re: Newbie here, 16 years with MS

Postby NHE » Thu Jul 05, 2012 2:09 pm

PaBuggles wrote:I take two Calcichew D3 Forte tablets (500mg) each day as prescribed by my neurologist. Having looked more closely at the cod liver oil capsules (of which I also take two daiily) there are only trace amounts of vitamin D in them (25 micrograms) and 100mg of omega-3 oil.


Re: Vitamin D3, 1 IU = 0.025 micrograms (µg), therefore 25 µg = 1000 IU.
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Re: Newbie here, 16 years with MS

Postby jimmylegs » Thu Jul 05, 2012 3:37 pm

i hunted around for the amount of d3 in the calcichew d3 forte. the calcium part is 500mg, the d3 part is 400 IU. so you're getting 800 IU with the calcium, and another 2000 IU from your two CLO caps, for a grand total of 2800 IU d3 per day.

just my 2c, but not sure it's wise to take that much without also taking magnesium and zinc (and the zinc has to be balanced with a little copper..), but that's just my opinion. i've experienced the down sides of depleting both those nutrients myself. i'm much more careful with d3 now!
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: Newbie here, 16 years with MS

Postby PaBuggles » Fri Jul 06, 2012 4:38 am

jimmylegs wrote:i hunted around for the amount of d3 in the calcichew d3 forte. the calcium part is 500mg, the d3 part is 400 IU. so you're getting 800 IU with the calcium, and another 2000 IU from your two CLO caps, for a grand total of 2800 IU d3 per day.

just my 2c, but not sure it's wise to take that much without also taking magnesium and zinc (and the zinc has to be balanced with a little copper..), but that's just my opinion. i've experienced the down sides of depleting both those nutrients myself. i'm much more careful with d3 now!

Hmm, that goes to show what I know about reading the labels! I think I'll stop taking one of the cod liver oil tablets then, and strt looking at more ways to get magnesium and zinc into my system. Thanks for the heads up. Incidentally what down sides are you referring to?
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Re: Newbie here, 16 years with MS

Postby jimmylegs » Fri Jul 06, 2012 4:57 am

no probs. i was taking doses along the lines of 25,000 IU per week, got a smaller syringe so that i could dose out a smaller drop and now i take about 5000IU per dose, every few days. probably not enough if it was winter, but i'm outside a lot. i depleted both zinc and magnesium via diet, (among other important things), got sick, then learned about vit d3, started piling it in, depleted zinc and magnesium further and experienced dangerous, life threatening problems with cognition (zinc) and functionality (magnesium). almost had my drivers' license pulled. and thought i was going to asphyxiate if my throat got stuck again with my airway closed, alone, unable to breathe. wasn't fun. purely nutritional. took quite a while to correct to the current point. if you pick up magnesium, look specifically for magnesium glycinate. most of the common magnesium supplements aren't as soluble as you need and will go right through you. for zinc they say zinc picolinate is best. if you can find a 50mg one that also is balanced with 2mg copper, that should be ideal. for more info do have a read of my 'signature' links. any other questions, feel free :)
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: Newbie here, 16 years with MS

Postby PaBuggles » Fri Jul 06, 2012 8:38 am

jimmylegs wrote:no probs. i was taking doses along the lines of 25,000 IU per week, got a smaller syringe so that i could dose out a smaller drop and now i take about 5000IU per dose, every few days. probably not enough if it was winter, but i'm outside a lot. i depleted both zinc and magnesium via diet, (among other important things), got sick, then learned about vit d3, started piling it in, depleted zinc and magnesium further and experienced dangerous, life threatening problems with cognition (zinc) and functionality (magnesium). almost had my drivers' license pulled. and thought i was going to asphyxiate if my throat got stuck again with my airway closed, alone, unable to breathe. wasn't fun. purely nutritional. took quite a while to correct to the current point. if you pick up magnesium, look specifically for magnesium glycinate. most of the common magnesium supplements aren't as soluble as you need and will go right through you. for zinc they say zinc picolinate is best. if you can find a 50mg one that also is balanced with 2mg copper, that should be ideal. for more info do have a read of my 'signature' links. any other questions, feel free :)

I know what you mean about your throat closing up. 8 years ago I was in hospital for routine steroid treatment, and I caught one of those hospital bugs. I developed epiglotitis and my thoat closed over completely. I spent two weeks in an induced coma, so what waas supposed to be a five-day stay became a monthh. To top it all off, my poor wife was eight months pregnant with our first child! It's after that incident that the MS became secondary progressive.
Visit my MS blog http://pabuggles.blogspot.ie
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Re: Newbie here, 16 years with MS

Postby jimmylegs » Fri Jul 06, 2012 2:04 pm

omigosh that sounds NASTY. no fun at all.
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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