This Is MS Multiple Sclerosis Community: Knowledge & Support

hi there brom, i don't think i've lost it completely yet heheh crazy like a FOX maybe

tests don't cost me anything silly! also i think i have about a century of buying supplements ahead, before i could come close to the year one price tag for rebif!

i have been watching out for kangaroos and koalas but they don't seem to be part of the inner city scene... í'll be careful when the weather heats up at the moment i'm wrapped up in pjs and blanket! not exactly toasty weather.

Sorry I forgot it was winter in Aus.

I don't want to scare you but Australia has some of the most dangerous wildlife - saltwater crocodiles, various poisonous snakes, great white sharks, black widow spiders etc. The country is also overrun with cane toads - don't lick there backs in the search for MS therapies to add to your list. Worst of all is the box jellyfish. Scientists have been looking at the cone shell, which is poisonous, in relation to neurological disorders. But let them finish their work first.

It can be a dangerous place and not suitable for a girl from Chicago. I pity you boyfriend when on your return you come back with your own Crocodile Dundee.


Ian

omg lolol i promise i'll be careful hehehehehe and i will warn chicago girls if i meet any lol!

d supplementation continues to go smoothly. having trouble getting potent iron here though. it's mostly about 1/10th what i need in order to get the stores back up. i'll need my 300s sent over from home i think, but will check once more with a local pharmacy first. will get it sorted out soon, one way or another!

time for an update i think! have not located any or to add to the regimen yet, brom. in fact i've seen as many kangas and koalas as i have dodos and dinosaurs. but i'm sure there will be some around at some point!

ok so i did mention the iron problem in a previous post or two, and i have managed to get my hands on some good potent ferrous sulfate in order to address that deficiency. however, i've been getting to feel kind of crappy too.

on another tangent i had been looking at zinc for management of candida albicans, but it turned out to have more links to my overall health than i had anticipated! so in the end i read that high doses of iron can really screw up your zinc. now zinc is a toughie for vegetarians, and when you add in that high dose of iron then you're really in for some fun. the jimmylegs made an emphatic reappearance over the last few days. but now am taking some big zinc doses along with the iron, and will keep u all posted on the outcome. legs seem fine now after only two doses of zinc, and i have noticed instant outcomes from supplements in the past, but i want to see if the legs are jumping this eve before i have any confidence that the situation has been put onto the right path again. freaking nutrition. lol!

only one jimmyleg incident this whooole day. woo hoo!

okay time for an update.

i have been working on a number of nutrients but the last set of tests were for vitamin B12, 25(OH)D3, and Iron.

i was soso with the B12 at last test, and my most recent results i'm up to 658, which is stellar. want to be over 500. yaaaa hoooo!

my D3 was 149 nmol/l after the megadose, and i have not been vigilant with the 4000IU per day since a trip over east in late august. as of last week's test it is down to 119. i'm not too upset, the days are getting nice and sunny. and i can get back into the 4000 routine no prob.

the iron has gone from deficient (under 20 i believe) to 78. normal range 20-180. so, feeling good about that.

now, on to uric acid. at the last test i was 194 μmol/L (3.26 mg/dL). normal is 140-340 μmol/L (3.0 - 7.2 mg/dL). however, the study below places my nice little uric acid value right in the ms camp. so my next task is to get the danged UA up into the "control group" range. garçon! some liverwurst, s'ilvousplaít!

Serum uric acid levels in multiple sclerosis patients correlate with activity of disease and blood–brain barrier dysfunction
G. Tonceva, B. Milicicb, S. Toncevc & G. Samardzicd

Several findings suggest lower levels of serum uric acid in multiple sclerosis (MS) patients. The aim of this study is to investigate relationships of uric acid serum levels in relapse–remitting (RR) MS patients with clinical activity of disease and blood–brain barrier (BBB) condition. Sixty-three definite RRMS patients and 40 controls divided into two groups: 20 healthy donors and 20 patients with other inflammatory neurological diseases (OINDs) were analysed. By using a quantitative enzymatic assay according to the manufacture's protocol and a commercial uric acid standard solution, serum uric acid levels were measured and the results were standardized. To investigate BBB function, magnetic resonance imaging after administration of gadolinium was used. MS patients were found to have significantly lower serum uric acid levels (193.89 ± 49.05 μmol/l; mean value ±SD) in comparison with healthy donors (292.7 ± 58.65 μmol/l; P=0.000) and OIND patients (242.7 ± 46.66 μmol/l; P=0.001). We found that MS patients with relapse had significantly lower serum uric acid levels (161.49 ± 23.61 μmol/l) than MS patients with remission (234.39 ± 41.96 μmol/l; P=0.000) and more over, MS patients with BBB disruption had significantly lower serum uric acid levels (163.95 ± 26.07 μmol/l) than those with normal BBB (252.48 ± 25.94 μmol/l; P=0.000). Further, we also found that serum uric acid level independently correlated with disease activity, BBB disruption, and gender. These results indicate that lower uric acid levels in MS patients are associated with relapse and suggest that uric acid might be beneficial in the treatment of MS.

or for the vegetarians, Inosine, Molybdenum & Lecithin I think.

ya as a former strict veggie, i was looking for inosine when i was in auckland on the way here in july. and i have taken lecithin too, if not molybdenum (other than in a multimineral that is).

[2012 update: vegans/vegetarians/omnivores/fruitatarians/raw foodists everyone, figure out your zinc-rich food options and make sure your serum levels are up in the high teens, 18 or so. don't mess around with this one, it's too important].

... just for anyone coming in unawares:

"statistical evaluation of more than 20 million patient records for the incidence of MS and gout (hyperuricemic) revealed that the two diseases are almost mutually exclusive, raising the possibility that hyperuricemia may protect against MS." (http://www.pubmedcentral.gov/articlerender.fcgi?artid=18479)

so. gout is seen in levels above 6 mg/dL, some sources say above 8 mg/dL. so now i know when to stop anyway!

went to see my peripheral neuro guy today for 1 year follow up, who originally referred me to my lame MS clinic. i like my peripheral guy. sometimes he pulls out big words but i have big words too now so it's fun lol

we set up a brain + total spine mri for september when i get back from quebec, so we will have a look at the state of things then.

i just called my doc's office for my feb 27 lab results. i didn't supplement for a long time beforehand but had stopped being vegan long before so wanted to assess if the dietary changes were enough at this stage.

serum ferritin is now 64, it was 36 a year and a bit ago. this probably reflects a few rounds of supplementation and the switch to eating animal products. so that's all good.

B12 is down from 658 pmol/l (that level was done around october-ish, 2006). is now 401 pmol/l so that needs some attention as i want it over 500.

uric acid is a shocking 185. this is bad news as i was at 194 early in 2006 when all the $h!t hit the fan, and i was trying through eating meat to get up to the optimal 290 level. i will have to get on the inosine bandwagon, but in the meantime will eat steak and kidney pie every day for a week and see how that pans out hehehe! [2012 comment: WRONG WRONG WRONG. do not throw high purine foods into a zinc deficient body that can't effectively make the conversion from ammonia to urea to uric acid. you'll just drive up your ammonia levels, if i come back to this post i'll link up to the relevant point in this topic that includes the research links]

my D3 has dropped from 112 nmol/l to 80 nmol/l. this is bad. need to keep it over 100, and i'd be happier if it was closer to 150. [2012 update: in hindsight these bad levels are all about the zinc status. at this point in time i was really reacting badly to bread, which would have been making the problem even worse anyway]

folate is good at 1287. thought that was wierd and why was i not itching. i had thought that was outside the normal range and that my last value when i was itching was 1270. but i just looked at the file and the value when i was itching was 2170. [2012 update: i have taken that same amount of folate in a supplement since the itchy 2170 episode, but i didn't itch. i must have been missing something required for handling folic acid so it just accumulated. one guess what i think it will turn out to be :S].

this was interesting to go back over this section a bit and refresh my memory about things that worked before.

my throat started to act up a little over the last few weeks, and eventually i decided it was magnesium, maybe because of overdoing the anti-carb thing. the magnesium helped, i thought, briefly - but then the problem came back. and also the jimmylegs. so now i think the magnesium dose and the improvement was perhaps only concidental.

when i thought back, i thought i remembered that my second bout with the jimmylegs problem (and a hint of throat issues) was partly iron, but rereading this forum, i realize it must have been zinc working with iron so have added zinc back into the daily mix for a while, will keep yas posted. only started taking the zinc last night and there hasn't been a jimmyleg incident yet today but we shall see! can't tell about the throat at the moment as i have a cold and my lungs are congested anyway.
[2012 update: a *cold*?? you definitely lapsed on your zinc intake, 2007 jimmylegs.. tsk tsk]

JL, your earlier posting mentioned you have an MRI session set for September. Within the last week I caught a health report on TV that featured some guy who had a skin reaction (thickening or stiffness--sounded similar to scleroderma) to the Gadolinium given in his MRI. I'm sorry I have not checked this out further first; I know that I am known for only having half the story. I think the TV station gets their health stories from Ivanhoe. com so you might check for it there first.

You are so good about getting info!

Since you have had skin problems in the past (?), I only mean to alert you to a possibility of one with Gadolinium--something to watch for maybe.

thanks much LC, it's true i do have a couple ongoing skin problems. the fungal one that i thought i had got rid of has re-emerged over the last week. plus i just started a liver/kidney cleanse to see if it helps at all with the old psoriasis issues. will keep an eye out for info re: the MRI and skin reactions. [2012 update: omg, all at least partly zinc, wow i was a dummy!]

re: info gathering, ya i couldn't believe how great my neuro was, he didn't outright suggest it or anything, but at the end of the appt he just kind of generally asked if there was anything he could do today in the way of testing, and i said MRI?? maybe?? and right away, he was like sure! and did the paperwork. two years ago i never would have believed a person could get warm fuzzies over how easily you can get shoved into a giant noisy claustrophobic magnet scanner
jeeeeeeez!

Are you still taking the Vitamin D and do you think it has made a difference?