MS Nutrition-summary pts 1st post, p.1

Tell us what you are using to treat your MS-- and how you are doing.

Mega D

Postby Kasuku » Fri Aug 10, 2007 5:32 pm

Interesting paper about light/dark cycle and melatonin and breast cancer. It would be interesting to do a similar epidemiological study for MS. Do people with long daily light exposure (working night shift) are more at risk of developing MS? Maybe the association of latitude and MS is not due to lack of UV light in the winter but too much or long light exposure in the summer, in most Northern and Southern latitudes.
I don't think taking melatonin would help because if I recall, the pineal gland is stimulated by light exposure and melatonin feedback. Too much melatonin by supplement may reduce the production of endogenous melatonin by the pineal gland and cause it to atrophy. The 12/12 will be hard to do as we live with so much artificial ligths all around for long periods. Anyway, I like the exchange of ideas.

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Postby jimmylegs » Wed Aug 15, 2007 9:18 am

revisiting the recent back pain issue, it is thoroughly gone.

i have been back on my d3 for the last week with no recurring pain issues. this week the daily regimen has included:

2-4x acidophilus capsules
1x 800 IU natural ratio vitamin E
1x 1000 mg vitamin C
1x B100 complex
1x liver cleanse capsule
1x multivitamin/multimineral capsule including 5000 IU retinol
1x D3-calcium-magnesium-zinc capsule (200 IU D3 - corrected from 1000IU, must have been tired when i posted this before, sorry - balanced with the rest)
3x 1000 D3 (said 1x before - i corrected myself)
2 tsp liquid iron supplement

i had a bit of extra zinc in there for the first few days but it has run out now and i'm more counting on the multi. will probably ramp the D3 up a bit more again, but in september after some bloodwork.

have been slacking on my lecithin granules and my omega 3-6-9 oil.
Last edited by jimmylegs on Fri Sep 14, 2007 6:19 pm, edited 1 time in total.
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Postby jimmylegs » Thu Sep 06, 2007 3:18 pm

started investigating some cancer stuff and am on a big vitamin A kick for that right now. not sure exactly why i skipped vitamin A for MS in the first place, but i've started going back to that now, here's the first abstract:
Mult Scler. 2002 Dec;8(6):452-8. Links
Retinol measurements and retinoid receptor gene expression in patients with multiple sclerosis.Royal W 3rd, Gartner S, Gajewski CD.
Department of Neurology, Johns Hopkins University, Baltimore, Maryland 21287, USA.

Treatment with interferon (IFN)-beta1a has been associated with decreased disease activity in patients with multiple sclerosis (MS). In several biological systems, type 1 IFNs and retinoids have been demonstrated to have synergistic effects. In these studies, we measured blood and cerebrospinal fluid (CSF) retinol levels and naïve and memory T-helper cell subset percentages in samples from a group of patients with MS. We also examined retinol receptor expression in peripheral blood cells from MS patients with or without a history of prior treatment with IFN-beta1a. The mean plasma retinol level for untreated relapsing-remitting (RR) MS patients was lower than for patients with noninflammatory neurological disease. Among IFN-beta1a-treated RR patients, mean levels were slightly higher than for RR patients not on treatment Lower plasma retinol levels among the MS patents studied were associated with higher CSF retinol index measurements--a measure that was calculated to correct for nonspecific leakage of retinol from blood into CSF. Far the MS samples examined, there was a borderline statstically significant direct correlation between CSF retinol index measurements and CSF memory T-helper cell percentages. Examination of peripheral blood from untreated RR patents for retinoid receptor mRNA expression revealed the expression of the retinoic add receptor (RAR)-alpha, RAR-gamma, and retinoic X receptor (RXR)-alpha receptor subtypes. For RR patients on IFN-beta1a therapy, expression of the some RAR subtypes was noted as well as expression of RXR-beta and RXR-gamma. These studies suggest an association between plasma retinol levels and clincal disease activity in patents with MS and that treatment with IFN-beta1a may be associated with activation of specific retnoid receptor subtypes.
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Postby jimmylegs » Fri Sep 14, 2007 5:52 pm

okay so i went to talk to a new (to me) pharmacist about vitamin A the other day, and he diverted the convo straight onto magnesium.

this takes me back to the whole zinc thing i was mentioning when we started the light/sleep discussion. so zinc. all tied in there with magnesium. i told the pharmacist i had had some hopes for magnesium, but after taking it regularly with my D3 and calcium and zinc pill for such a long time, with only a mild effect at first, i had started to lose interest. he said, you have to take another dose of magnesium by itself. so i looked into that and it seemed pretty smart. so yesterday i stocked up on a few supplies and as of now, per day, i'm at:

1x multivitamin (including 5000IU retinol and beta carotene and a bunch of other stuff) capsule
1x B-100 complex caplet
4x 500mg ester-C capsule
3x 1000IU D3 tablet
1x cal-mag-zinc-D3 tablet
taking a break from vitamin E this week, but for this bottle i'm on 1x 800IU per day
1x 1200mg lecithin gelcap
2x 1200mg omega 3-6-9 gelcap
2x acidophilus capsule
4x 50mg zinc (added the last week and this, getting ready for mg) tablet
1x immune blend capsule

AND for this week, trial addition

2x 200mg magnesium capsule
1x 99mg potassium capsule

ALSO i've been skipping my liquid iron thing - it's so nasty!!! and i ran out of liver cleanse capsules. might grab some milk thistle something-or-other next time i run out of some ingredient :)

i am on day two of my extra mg and k plan, and my throat does seem to be functioning a LOT better. the sensation of spit going down the wrong way when i swallow is lessened, and i am coughing and clearing my throat much less, and when i do so it actually works and i have some peace for a while. compared to two days ago when i was barking like crazy, chest pain, difficulty breathing, to the point of going to the clinic on tuesday and a chest x-ray wednesday morning. it was bad - on monday night and tuesday i felt like i might not live til the end of 2007.

doesn't seem so bleak now. i checked some more research to reassure myself that i wouldn't be imagining it, and i checked with the family to see what they think, do i seem the same as monday to them? but they think i sound way better. and i'm not contemplating death any more :S

could be coincidence, or just a short flare-up of some kind, but i'll keep the extra mg and k up for a week, and see how it all pans out.

i'm also keeping an eye on the forearm spasticity and any jimmy in the legs, hoping this could provide added benefit in those areas.

MRI on the 17th! yeeks!
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MRI spine update

Postby jimmylegs » Thu Oct 11, 2007 6:27 pm

kind of interesting. i think there actually is some good change there, despite the recent final opinion. plus i have the actual images, and C3-C7 look better now to me, on screen. not to mention the l'hermitte's is gone!

AND, my neuro informed me today that i have carpal tunnel (you do this test where you hold your hands in front of your chest, elbows out to the sides, fingers hanging down to the floor, then press the backs of your hands together from the wrist to fingertips, so the wrists are pressed to 90 degrees or whatever your wrists can do. if your hands go to sleep, you have CTS). so maybe i'll be able to clear up some more of this nagging numbness left over in my hands. we shall see! i'm going to go the B6-B2 route for now; will add 100mg each per day to the current Bcomplex, just because Bs have worked so well for me in the past - even though they might not work for everyone in the world.

the hemangioma thing is new, they showed up on my skin in the last year too. after a quick hunt around, i intend to throw some iron at them (i have been lax on the iron supplements... i'm glad i have some marks on the outside, so i can see if it diligent iron supplementation does anything! ugh time to behave :S i'll go take some of my icky iron liquid...

January 26, 2006

MRI total spine.

Sagittal T1, axial T2, coronoal myelographic images have been done through the total spine.
Post gadolinium T1 sequences were repeated.
On the T2 sequences, note is made of increased signal in the cord, this is mostly in the cervical area. The increased signal in the cord extends from approximately C3 down to C7.
In the cervical area were the highest concentrations of increased signal being at approximately at the C3-4 and C6 levels.
At the D4 level, note is also made of a small area of increased signal as well as in the region of the superior aspect of the conus at approximately D12.
In addition, note is made of some bulging discs at the C4-5, C5-6, and C6-7 levels.
The bulge is greatest at the C4-5 level. There is no indentation of the cord, but the thecal sac is almost totally obliterated anteriorly. The neural foramen are within normal limits.

September 21, 2007

MRI of entire spine.

Provided clinical information: 36 yo female. Clinically definite multiple sclerosis.
Follow up to previous from January 2006.

Reference study: MRI of entire spine from January 26, 2006.

Protocol: Sagittal T2 restore, sagittal TSE T1, sagittal flair and axial T2-weighted sequences through the cervical thoracic and lumbar spines.

FINDINGS: Normal appearances of the craniocervical junction, no Chiari malformation.

There is an ill-defined focal area of increased T2 signal within the posterior cervical cord at the C3 level, with further areas of signal change in the anterior cord at the C5-C6 level, and possibly also the C4-C5 level.

There is no focal lesions seen within the thoracic cord. There is a further small area of increased T2 and FLAIR signal just above the conus at T12 level.
The cord ends at L1.

There is a number of small hemangiomas in the L5-L4 and S2 vertebral bodies.

Opinion: no significant change compared to previous.
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Postby jimmylegs » Sun Oct 14, 2007 6:54 am

ps. just re-reading... it was the brain on the 17th, spine on the 21st, just haven't been bothered to post brain yet.
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Postby jimmylegs » Sun Oct 14, 2007 6:57 am

throat update:

recap: VERY bad throat early september, magnesium recommendation mid-september, stopped all supps and added mg for a few days and it was magic, considered that i could have been overdoing something else not underdoing mg, steeled myself to re-introduce the rest of the regimen, and now i've added almost everything back into the mix with the magnesium (and potassium).

-800IU vitamin E and the immune blend.
-went a little lower on the multivitamin (the "1x" is divided into three pills per day for that brand, so maybe i only took 2 some days).

new stuff:
-finally started back in with the iron liquid about three days ago, so added 50mg zinc per day to go with it.
-also i had taken the 200mg zinc just for a few days, as i started putting everything back with the magnesium - most of the time between last vitamin post and the other day when i started the iron, my only zinc supp was in my D3 pill and my multi.

verdict so far:
the throat is really continuing to improve.
not perfect, i do feel like the tiniest bit of liquid could be sneaking down the airway when i swallow - i do still have to clear it now and then - but SOOO MUCH BETTER!

this coming week:
will re-introduce the immune pill and vitamin E daily

we'll see if it keeps working. on thursday my doc suggested referral to throat specialist, so will follow through with that too, don't suppose it can do any harm :)
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Postby jimmylegs » Tue Oct 23, 2007 1:52 pm

checkin in, still all good, added the E and immune pill this week, but i slacked a bit on taking stuff over the weekend.

throat's still doing well. not perfect, but it's holding at WAY better. i'm still kind of tired over all, but i did make it out to see a friend's band on saturday eve, and for a ~1-hr+ hike (read stroll, but into a deep ravine and out again) on sunday.

i took mostly all my monday supps and i'm half way through tuesday's batch. my legs went a little jimmy the last few days so i took iron (with a matching zinc boost) twice recently - first time was fine, but last night i did it again after dinner, and woke up today with stomach cramps. i will let you know if my suspicions regarding the iron's responsibility turn out to be correct! maybe fe's not the thing to take with a meal...!
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Postby jimmylegs » Fri Oct 26, 2007 5:15 am

seem to be all better in the guts now. was definitely a passing phenom. not sure what i did, but iron does seem the most likely culprit. nobody else that ate the same food had a prob!

am continuing to take as many of my supps as i can get through in a day. can't report anything particular on the carpal tunnel yet!
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Postby jimmylegs » Sat Nov 03, 2007 10:14 am

nothing major yet for results in the b-vitamin department, but it's been nowhere near 90 days, and also i've only been on 100mg per day of B6 and B2, and i have found studies that used more like 300/d for 90d for carpal tunnel without adverse effects. i suspect i'm low in B6 but thought i had better check before i spend much more time megadosing it. so, i figured why not check everything. got a huge requisition from my doc, and on nov 1st i started what will be a 2-week supplement washout before i go for the blood work.
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Postby jimmylegs » Sat Nov 17, 2007 2:18 pm

done the washout now, going to the hospital on monday for bloodwork.

what freakin ride the last 2 weeks have been. i crashed hard at first and my throat acted up right away. it took me a few days to realize i was starving, then i started eating more - lots of liverwurst and fish and kale and spinach and eggs in there - and started to equalize; the throat calmed down again.

so, feeling pretty okay. curious to see what the results turn up!
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Postby jimmylegs » Fri Nov 30, 2007 2:00 pm

so i lied about going for bloodwork on monday. i just finally did it this aft. i have been off the supplements for 1 month now and have gone quite a ways downhill, even started to walk funny again.
i am starting to consider getting some high dose injections on an intermittent basis, rather than be forever dependent on taking a bajillion pills each day!
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Postby jimmylegs » Sat Dec 08, 2007 5:38 pm

interesting thing. after the bloodwork, i thought meh, supplements are a pain and i didn't start up again. plus i do have to go stock up, and why go halfway, so i said. i've been a lazy ass this semester.

finally, couple days ago, the throat was ticking me off enough that i said fine, two magnesium for you, and SURE ENOUGH, next day, improvement.

coincidence, i thought. maybe last time AND this time, the magnesium throat fixes were both coincidences.

then, lying in bed this morning, i felt a sensation in my throat. i had forgotten about it, but that same weird sensation also happened last time when my throat was fixing up after a magnesium dose. an odd little throb, like if you tap 5 or 6 times fast, on your neck, right on the voicebox - imagine if you felt that just on the inside. so i think that is one too many coincidences.

somehow, i can only conclude that i have a magnesium-limited throat. strange.
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Postby jimmylegs » Mon Jan 14, 2008 8:49 am

okay, so since my last post i have been really slacking on the supplements, except for a bit of magnesium when my throat really bugged
me. i finally called the doc this morning to find out about my november lab results, and they faxed me over a sheet.

it's about time to get back on the supplement regimen again, as the legs have started to go jimmy again and everything.

the following list of results displays
test item; result; (lab reference range); "lab comment"

[sorry i can't align it as nicely in here as in notepad, and the lab printout doesn't come with units grrrr]

serum ferritin;...............82; (51 - 140); "probably not iron deficient"
ION Ca whole blood;........1.18; (1.15 - 1.27)
hemoglobin;................138; (115 - 165)
lymphocytes;....................8; (.2 - .8 )
monocytes;......................7.9; (2.0 - 7.5)
b12;............................542; (140 - 780)
Uric Acid;.....................194; (150 - 350)
25-OH vitamin d3;..........74; (22.5 - 94.3)
zinc;...............................8.6; (11.5 - 18.5)
vitamin a;........................1.5; (1.2 - 2.8 )
folate;........................1827; (none provided)

it's not the whole list of things tested, just the ones that i'm either concerned about, or really pleased with.

so for ferritin: gotta get it out of that "probably not" range into the "definitely not" range. because of that thing where iron assays over-represent your levels if you have an "autoimmune" condition.

calcium: guess i should up it a bit.

hemoglobin: klenner says it should be at least 13, so until i confirm units conversion, i'm going to guess that mine is 13.8 therefore okay.

those 'cytes look a little high, something to keep an eye on.

b12: YAY! i want it over 500. good times.

uric acid: BOO! stupid ms average, on the dot, AGAIN. food is not doing the trick, apparently.

d3: 22.5 - in the normal range?? that is so not healthy. 74 - BOOOO! i'm going to do that 50,000IU per day for 10 days thing again and kick it up to 150

zinc: interesting. i had not looked carefully through my posts once my legs went squirrelly during this last long layoff from the supplements. i kept having good intentions and then slacking.

the legs started to jimmy out on me again. i remembered an iron connection. i have purchased some within the last week and it worked somewhat. now my bloodwork shows low zinc. i just re-read my posts more thoroughly to note how while in australia i had connected the remaining jimmylegs issues to zinc, to resolve it the rest of the way.

so, i'll take zinc with meals, iron in between, and let you know if the jimmy thing backs off again.

vitamin a: not bad, think i'll get it a little higher though. need to check out the serum values and associated cancer prevention

folate: that's getting a bit high - i'll itch like mad if it gets over 2000 or so.

i was also checking my b6 to discover if my level was too high. it's middle of the road, luckily. i want to supplement it, as it is implicated in carpal tunnel syndrome. the level's not too high, so i'll take the recommended 90 days at whatever level per day, and see if the hands sort themselves out somewhat. i tried to get the riboflavin tested too (also implicated in CTS) but the lab didn't have the test. i have added CoQ10 which the book 'prescription for nutritional healing' lists as essential for treating CTS. will have to read up on it further.

that's all the news for today!
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Postby jimmylegs » Tue Jan 15, 2008 4:40 pm

little zinc update. i took 2x 15mg pills a few times, but the legs were still kind of jumpy. last night and through today, i have taken 2x 50mg zinc pills, at three separate times.

it came to me that if my zinc was deficient in november, and i hadn't taken any since then, that the situation probably was more dire than the 8.6 so i'm hitting it harder than i usually would. i think it is starting to work but will keep an eye on it and post tomorrow's jimmyleg status after some more 100mg zinc doses. or maybe i'll drop back to 50 at a time. depends how the legs are doing!

zinc; 8.6; (11.5 - 18.5)
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