Streaks of Silver Falling in front of my face

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
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jimmylegs
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Re: Streaks of Silver Falling in front of my face

Post by jimmylegs »

no problem :) a topic in diet and exercise will be an excellent place to have more conversation. if you follow up with a post there, i can include some links to older topics which are relevant, but scattered.
it sounds like it could be a very informative exercise, to go through your typical diet and take a closer look at how it compares to daily targets for key essential nutrients.
iima could you share any more detail on your vit E supplement? that is one nutrient that stood out, with b-complex vitamins, in a protocol which helped me a LOT (especially with ataxia), but vit E products are by no means created equal. some off the shelf formulations can actually be harmful.
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danielashell
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Re: Streaks of Silver Falling in front of my face

Post by danielashell »

Nature's Bounty time released b complex, and nature made E vitamin 400 IU
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jimmylegs
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Re: Streaks of Silver Falling in front of my face

Post by jimmylegs »

not the best. just alpha tocopherol im guessing? is it d-alpha or dl-alpha? the first one is slightly better than the second. but alpha tocopherol on its own drives the natural ratios of e vits in your body out of balance.
researchers had to stop a cancer study using dl-alpha vit e because ppl were getting cancer MORE. they concluded vit e at this dose 'and using this formulation' does not prevent cancer. and you can see in the study text, the gamma tocopherol (tumor-suppressant) levels dropping while the alpha levels go up.
now i say this having used high dose alpha tocopherol early on to very good effect, but once i learned about the natural ratio stuff i switched.
when it comes to supplements, this E8 complex is my go-to: http://newrootsherbal.com/product/id/1093
has all four tocopherols and all four tocotrienols, hence "E8"
and of course prioritizing essential nutrient intakes from healthy food sources is always a smart move :D
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danielashell
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Re: Streaks of Silver Falling in front of my face

Post by danielashell »

It says dl-alpha
This all sounds so confusing. See...this is why I never bothered with supplements before. I was always healthy and my body felt good. I always figured why mess with it?
Thank you for all of your help and patience. I'm so nervous and can't wait for this to be over. I keep going back and forth with thinking it may be MS but I'm also careful not to jump on that train without full knowledge. I feel like as soon as the doctors heard it's in my family, they are already diagnosing me before the mri is even done.
I am going to start a thread on the exercise forum because I do have other questions that are related to that.
Thanks again!
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Re: Streaks of Silver Falling in front of my face

Post by danielashell »

I had a really bad night last night with symptoms, and a bad day today. I have an interview at a new gym today and I just start to wonder if it's nerves from all this waiting.
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jimmylegs
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Re: Streaks of Silver Falling in front of my face

Post by jimmylegs »

ok so for any future bottles maybe try to find e8complex.
yeah i hear ya :S i got away with being vegan for 15 yrs before everything really smacked me upside the head. even before that i would have said i was healthy.
after this nutrition learning curve i know i never really was in the best shape i could have been all along. the docs had me on ponstan as a teen. all i would have needed was more mag. good old hindsight.
in the future, we will all be given a much better grounding in this stuff from day one throughout school. that way it won't seem so overwhelming and it won't be only after a crisis that people suddenly have to start from scratch.

the waiting is stressful for sure and i can relate to being funneled into an ms dx without individual factors really being given a thorough look. regardless of the final diagnosis, making sure signs of nutrient deficit are not clouding the doc's ability to make an accurate dx is a smart idea. it can all be so random-sounding. like low zinc is associated with worse night vision, and a zillion other things etc.

sorry to hear the symptoms are acting up :( good luck with your interview!
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danielashell
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Re: Streaks of Silver Falling in front of my face

Post by danielashell »

It's ok. I'm honestly starting to slowly get used to it.
So are vitamin deficiencies linked to ms....or is it rather that deficiencies are misdiagnosed as ms?
I really just want to know already so that I can figure out what exactly i need to do in order to get back to my old self.
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Re: Streaks of Silver Falling in front of my face

Post by danielashell »

Also, do you HAVE to have a spinal tap?? I don't want to!
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jimmylegs
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Re: Streaks of Silver Falling in front of my face

Post by jimmylegs »

ok good :)
the learning curve is certainly steep.. i def remember shutting off some of the mineral info. vitamins were all i could deal with in early days hehe. in hindsight, shoulda kept reading and dealt with a few issues WAY sooner lol
re nutrition, often your average ms patient will have a bunch of specific deficits or imbalances. i don't think it's absolutely one or the other though - eg with b12 they could have given me a plain old b12 deficiency dx if i not for a few other circumstances in my case.
1. they didn't have a clean read on my b12 status at time of dx bc i was frantically supplementing as my nervous system shut down.
2. my doc's computer software had a glitch so didn't show my record of undetectable b12 level, when the neuro checked in with my doc for past status.
3. also i had brain issues which they said was not consistent with b12 deficiency ( A) incorrect and B) you can have one thing affecting your spine and something else affecting your brain).
4. docs can be really stubborn about their dx criteria and even though it is a statistical tool, there was no convincing that a 15 year vegan should not be crammed into their average joe ms model.
since ms is still basically a mystery illness, i think in time everyone will qualify as 'misdiagnosed' as we gradually nail down all the various routes different people can take to arrive at a roughly similar constellation of symptoms (keeping in mind of course that ms is 'different for everyone' even though it has umbrella characteristics that allow sweeping classifications of remitting and progressive etc)

spinal tap SUX OMGGG i had the worst even post LP headache. read everything about needle bevel and so on. ensure best possible zinc status to optimize puncture healing. horizontal bed rest for as long as you can after the procedure. with my crappy vegan low zinc (which i didn't know about at the time) meant my puncture (oh and i had two btw because i could feel the first attempt too clearly) did not heal properly. i was threatened with a 'blood patch' which sent me obediently to the couch for the weekend and that was enough to close it up. in hind sight, zinc zinc zinc get that thing to heal up as quick as you can. stay prone for a good couple hours after procedure. and learn about the significance of needle bevel :)
do you have to have it? it's part of their dx process. it's up to you whether you want to know if your csf proteins and o-bands etc match 'most ms patients' csf or no. mine did and i still don't care. it's still just statistics.
this looks interesting, re genetic differences between ms patients with and without o-bands in csf: http://www.neurology.org/content/67/6/1062.abstract
even with genetics in mind, i'd still be looking at nutrigenomics and how nutrients control genetic expression http://link.springer.com/article/10.100 ... 013-8498-3
i just think science is early in the curve re understanding the intersections between complex nutrient interactions and how they intersect with ppls genetics.
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Re: Streaks of Silver Falling in front of my face

Post by NHE »

danielashell wrote:It says dl-alpha.
The DL- form is synthetic. Only 12.5% is the natural RRR- isomer. Vitamin E is actually a family of 8 different molecules, alpha, beta, gamma and delta tocopherol and alpha, beta, gamma and delta tocotrienol. Please see one of my prior posts on this topic for further discussion. http://www.thisisms.com/forum/natural-a ... ml#p186674 If you're going to take vitamin E, then it's best to take a natural form which has a blend of all 4 tocopherols and tocotrienols.
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Re: Streaks of Silver Falling in front of my face

Post by danielashell »

Thank you for all of your knowledge. This is a LOT of information to take in. I will be reading up on all of it and discussing it with my gp.
They only did an mri without contrast yesterday....shouldn't they do both?
Also, I asked them if they are gonna read it they said yes but we can't tell u anything. Then when the mri was through they said when do u see ur doc again?
I said jan 17....they said u may wanna call her in the next day or 2 and get in sooner.
Soooo....hopefully that means good news and they didn't want me to be anxious for the nxt cpl wks.
This is just a lot and I have a feeling it's going to be a bug circus and appt after appt with no answers.
Ugh
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jimmylegs
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Re: Streaks of Silver Falling in front of my face

Post by jimmylegs »

hey there, hopefully you get the results details soon :) there are advantages to mri with contrast but they probably have a good reason they didn't bother. i my case i think i had contrast for the first ones but not later on.
docs are great for lots of things but i've rarely met one who can really teach me something about nutrition. it's more the other way around :S lol sad but true.
something to consider (long forum search result link shortened): http://bit.ly/2hPIIpM
you may have an unusual doc, but if not might be an idea to ask for referral to nutritionist, for any follow-up along those lines :)
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Re: Streaks of Silver Falling in front of my face

Post by danielashell »

Thank you very much. Not sure that I will call my doctor or just wait until the 17th. A nutritionist would be good. ...and I know a few as friends so I could always inquire.
I know what you mean about doctors, I've had several as clients...and ya....some not the healthiest bunch when it comes to what they put in their bodies.
If any of you have a fb please add me! I've been enjoying reading all of the ms and autoimmune blogs people have. Very enlightening!
https://www.facebook.com/daniela.shellhammerhallick

Hope everyone is enjoying the season! Blessings!!
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Re: Streaks of Silver Falling in front of my face

Post by jimmylegs »

if there's one positive thing about getting sick, it's how much fun you can have learning all about it lol!!!
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Re: Streaks of Silver Falling in front of my face

Post by danielashell »

Just got a call from my GPS office referring me to a spine specialist. They said my brain was clear and that my neck has protruding disks and spinal stenosis. No signs of ms.
They didn't do an mri of my spine. Just neck and brain.
I'm going to continue to research deficiencies. I have a hard time believing a couple herniated discs would cause all these problems.
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