Where does the time go? (9 years since my CIS)

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Youarethecure
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Where does the time go? (9 years since my CIS)

Post by Youarethecure » Mon Feb 19, 2018 7:53 pm

First off, I hope everyone here is doing ok. I do not frequent this site much anymore, and I hope the best for everyone here. Elliotb, Jimmylegs, Lyndacarol to name a few. Everyone here has helped me so much through my fight. This site is truly awesome for people looking for help or looking to gain proper knowledge about MS.

I cant believe it was 4 years ago I joined here with my world in a tailspin and not knowing which way was forward or backwards...... And its been over 9 years since my first bout of Optic Neuritis.

With all things considered I am doing very well. I have not taken any medication in over 2 years now. I just focus on weight lifting, diet, nutrition, marijuana and lifestyle modifications. Whatever happens, I am here to handle it...... One day at a time.

.... yeah well basically just wanted to say hello and see how everyone is doing.

Best wishes to all,

Chris

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jimmylegs
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Re: Where does the time go? (9 years since my CIS)

Post by jimmylegs » Tue Feb 20, 2018 5:21 am

hey there, glad to hear you've been doing well!
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!

ElliotB
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Re: Where does the time go? (9 years since my CIS)

Post by ElliotB » Tue Feb 20, 2018 7:50 am

Glad to hear you are doing well!




"I just focus on ..... marijuana"

What are you taking and how do you find it is helping you?

koneall
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Re: Where does the time go? (9 years since my CIS)

Post by koneall » Tue Feb 20, 2018 8:08 am

9 years no recurrences? I'm 7-months since the first attack and am hoping my case will be CIS. Can you say more about the weight-lifting and diet?

kevin

Youarethecure
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Re: Where does the time go? (9 years since my CIS)

Post by Youarethecure » Tue Feb 20, 2018 12:38 pm

Ohh dear, not near that lol. I have had many many many many many issues along the way. I have gone through optic neuritis 4 times now, fatigue, heat intolerance, lost complete feeling in my legs once, neuropathic itching, lost complete use of my lower left leg once, just to name a few. I did go about 5 years till it truly started after the CIS though. I have always recovered from all these issues back to almost normal.

I do a strict weight lifting program 4 to 6 times a week. I do back one day, then chest, shoulders, arms and legs. I mix it up and change everything every week. There have been a few studies and it seems it might have neuro protective and maybe even neuro regenerative properties. It is very tiring and I am yawning through it most days but I truly feel it helps a lot.

When it comes to diet I am most interested in getting proper nutrients while limiting bad stuff. I try and keep my diet balanced on an inflammatory level. I also supplement with vit d, magnesium, potassium and b12.

Now, I did take copaxone for over 1 year and became allergic to it so I stopped. I decided after that to not try any other medicine. I would recommend medication in your situation, stop or slow it down while its still very early. But that is just my opinion...... One of the most important things to know is that MS is unique to each person, and in my opinion that means what works well for each person is also unique.

I use marijuana daily by smoking it. There are other ways of getting the benefits if one doesn't want to "get high". I would highly recommend learning all there is to know about CBD and marijuana with regards to MS. It helps with spasms, pain, sleeping, and it is said to have neuro protective properties. This is one of many articles explaining the benefits of cannabis with MS. https://herb.co/marijuana/news/marijuana-and-ms

Kittie
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Re: Where does the time go? (9 years since my CIS)

Post by Kittie » Wed Feb 21, 2018 3:30 am

Hi, glad to see you are taking vit D, Magnesium , potassium and B12, and also looking to your diet and exercise.

How much D3 do you take and also Magnesium? Have you ever been on the Dr. Coimbra protocol?
Best wishes,

Kittie.

koneall
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Re: Where does the time go? (9 years since my CIS)

Post by koneall » Thu Feb 22, 2018 10:49 am

I keep hearing this song since this thread started.

Youarethecure
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Re: Where does the time go? (9 years since my CIS)

Post by Youarethecure » Thu Feb 22, 2018 1:17 pm

I take 5k units of d3 maybe like 5 times a week or so. I take off one or two days here and there. Magnesium I do about 400 mgs daily. But I also eat a very nutrient dense diet. So those numbers are a bit lower than I actually intake. I eat a lot of fish, veggies and fruit while limiting the bad stuff. I juice carrots, spinach, and fruits daily. I have not tried that protocol before. I am comfortable doing what I am doing because it seems to be helping a lot.

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jimmylegs
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Re: Where does the time go? (9 years since my CIS)

Post by jimmylegs » Fri Feb 23, 2018 11:21 am

pls refresh on chem form of magnesium taken?
also, pls *always* take mag at same time as the 5K d3, and then more at a different time (obvi, 1 mag dose is ok on days you are not taking supplemental d3).
this is advice passed on from a pharmacist about a decade ago when 4K IU d3 per day taken long term was causing issues i thought would kill me. (dose having been selected as safe based on published research - still unwise in hindsight) throughout, i had been taking 300mg mag citrate daily with my d3. (again unwise in hindsight)
pharmacist's advice on timing turned the worst of it around in 2 days, even using just mag oxide. but it took at least months and maybe years to replenish depleted tissue mag stores after that. ie before i could go a day without supplementation and not know about it immediately by feel.
his advice saved me from who knows what worse side effects.
mag form was not something the pharmacist passed on to me back in the day, so i had a 'fun' learning curve - first with oxide, then citrate, then bisglycinate, finally settling on magnesium glycinate.

i'm fascinated to see in another discussion serum d3 levels up in the 200nmol/L neighbourhood with no d3 supplementation whatsoever, just magnesium and a scant handful of other supps. i know my earlly dose response to d3 intake tripled after correcting nutrient status in general, mag and zinc in particular. had to back off on the d3 after that to keep things in line. interactions are fascinating :)
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!

Zyklon
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Re: Where does the time go? (9 years since my CIS)

Post by Zyklon » Fri Feb 23, 2018 2:53 pm

Weight training is the most underestimated part of MS. I bet it is one of the best ways for neuro regeneration. What if nervous system is just like muscle? Weight lifting for more remyelination?

More research please. Oh wait. F-word you big pharma...
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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jimmylegs
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Re: Where does the time go? (9 years since my CIS)

Post by jimmylegs » Fri Feb 23, 2018 3:09 pm

provided nutrient status is optimized, and intake is consistent with level of exertion, of course.

how many undernourished athletes with 'ms symptoms' have shown up here at tims!

less specific, but something:

Effects of Exercise Training on Fitness, Mobility, Fatigue, and Health-Related Quality of Life Among Adults With Multiple Sclerosis: A Systematic Review to Inform Guideline Development
http://www.archives-pmr.org/article/S00 ... 4/abstract
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!

Youarethecure
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Posts: 322
Joined: Mon Jan 27, 2014 8:44 pm

Re: Where does the time go? (9 years since my CIS)

Post by Youarethecure » Sat Feb 24, 2018 5:49 pm

I don't remember the specifics of all the stuff I take these days. But you were the one that helped me set it all up years back. Everything I take is all based from what you have told me and what I have learned. As usual, thank you for the help.

I agree with everything you said Zyklon.

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jimmylegs
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Re: Where does the time go? (9 years since my CIS)

Post by jimmylegs » Sun Feb 25, 2018 12:45 am

well if not interested in taking care re mag form and timing in relation to d3, your call
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!

ElliotB
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Re: Where does the time go? (9 years since my CIS)

Post by ElliotB » Sun Feb 25, 2018 3:53 am

"Weight training is the most underestimated part of MS"

Pretty much EVERYTHING about MS is underestimated! In spite of years and years of research, little is known definitively about MS itself or the many treatments thought to help.

koneall
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Re: Where does the time go? (9 years since my CIS)

Post by koneall » Mon Feb 26, 2018 10:36 am

Studies have shown that heavy exercise stimulates testosterone. I wonder if a testosterone deficiency is why the problem is mainly in women. Regardless, I spent three hours in the weight room yesterday.

kevin

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