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MagPi
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Joined: Thu Mar 21, 2019 1:47 am
Location: UK

Hello

Post by MagPi » Thu Mar 21, 2019 12:57 pm

Newbie here, located in the UK.

Diagnosed with RRMS June 2018. Started Tecfidera Nov 2018. Initial MS flare-up at time of diagnosis built over a week to then endure for about 8 weeks before remitting (typical "MS hug" symptoms - full torso, and entirety of right hand side limbs affected after starting in fingers of right hand, with some mild pins and needles in sole of left foot and tips of left hand fingers at peak of the flare-up). MRI revealed lesions at C2 in cervical spine. Remission brought retreat of symptoms except for still-current residual symptoms to varying intensity and distribution throughout right arm and hand. Started on Tecfidera Nov 2018 - thus far with no side effects other than occasional (about twice a week) flushing as seems fairly common. Also taking Vit D as indications were that Vit D levels were borderline OK; and, frankly, access to sunlight and natural Vit D in the UK climate is not the best for most of the year. Four months after starting Tecfidera (and 10 months from initial diagnosis), sometimes the residual symptoms are barely noticeable and limited to mild numbness in fingertips of right hand; other times the intensity is fairly pronounced and experienced throughout my right hand arm up to the shoulder.

Nil known family history of MS. I'm in my 50's, so, by all accounts, a rather late onset.

So I'm still trying to learn how MS is affecting (and will in future affect) me and found this site by chance.

Glad to have found it.

Zyklon
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Location: Turkey

Re: Hello

Post by Zyklon » Sat Mar 23, 2019 7:44 am

Welcome ;)

Good diet, dealing with mineral/vitamin deficiencies, some exercise. If you take D3, please take it with magnesium. In my experience, magnesium level effects us much more than non-MS people.

Take care
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!

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MagPi
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Joined: Thu Mar 21, 2019 1:47 am
Location: UK

Re: Hello

Post by MagPi » Sat Mar 23, 2019 2:58 pm

Thank you, I’ll give the magnesium a go!

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jimmylegs
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Re: Hello

Post by jimmylegs » Sat Mar 23, 2019 3:01 pm

hi :) can you share how much vitamin d per day? and is it vitamin d3? do you know the serum level you're aiming for?
also, are you familiar with the pros and cons of different types of magnesium on the market? might sound trivial, but is not!
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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MagPi
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Location: UK

Re: Hello

Post by MagPi » Sun Mar 24, 2019 3:49 am

Hi jimmy

I’m on up to 4000iu of vit D3 tablets a day, but I vary it and sometimes take 2000iu or sometimes go without for a time. That dosage was advised by doc after blood tests etc., so I would say anyone considering vit D intake should consult a medical opinion and dosage tailored to their circumstances.

I’ve not yet taken magnesium but will be looking into it.

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jimmylegs
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Re: Hello

Post by jimmylegs » Sun Mar 24, 2019 4:32 am

hi again, some info to consider...

pharmacist relay:
-take half your daily mag right with the d3,
-take the other half well away from the d3.

per research and xp:
-RDAs are currently under review for mag. they are probably too low.
-current RDAs are based on average reference cases. for men that is 70 kg with moderate activity.
if you're not that, adjust intake accordingly.
-over the last 50 yrs some researchers have suggested 7-10 mg/kg body weight per day, to reflect conditions associated with modern lifestyles.

note the array of interactions:
any kind of stress (physical, trauma, surgery, mental, emotional), high long term d3 intake, some meds eg PPIs and some chemo drugs, high bmi, high activity/sweat, alcohol intake, etc etc etc.
any applicable factors influence your personal daily mag requirement.

re form: magnesium glycinate (ie mag oxide with some glycine) aka magnesium bisglycinate aka magnesium diglycinate is well absorbed into tissue.
compare magnesium oxide on its own which is a great laxative in higher amounts, ie not well absorbed into tissue. if you try to high dose magnesium oxide, stay close to restroom facilities. \
transdermal works too eg epsom salts baths or foot soaks.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

roma
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Posts: 2
Joined: Tue Apr 25, 2017 6:28 am

Re: Hello

Post by roma » Sun Aug 18, 2019 12:37 am

Oi Eu sou da Ucrânia. Eu estou doente há 10 anos Quem está aqui da Ucrânia?

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