bloodwork monitoring

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

Post by jimmylegs »

welp i've been feeling a bit on the crap side and some of the answers are coming in now. most levels look great; the main news so far is serum magnesium on the low side of normal. looks like some regimen juggling is in order!

update: high normal ferritin and copper with low normal zinc. see this is why you need data not guesswork. i was imagining i was tired from low ferritin. not even close. bring on the zinc!!

dec 11 update (background: had had some significant challenges starting at the end of october - coincidentally, just before/as the bloodwork results came in - into early december, mainly sudden onset right-sided spasticity and right-sided head to toe numbness):

off to the doc first thing tomorrow. still working hard on the self care management details, as informed by last tests.
subjectively everything keeps getting better day by day. daily waking fatigue cleared up first. then the right sided spasticity/numbness, although pre-existing chronic paresthesia (not ms origin) - is still present. i had been feeling confident about driving again for a long time, but had first opportunity to try it today. no probs :D

dec 18 update:

got the new requisition. not without a bit of push back from the relatively new-to-me doc. but i have it in hand, and we shall see what fruit my recent efforts may have borne. subjectively, things are much better :D now to see if updated data matches how i feel.

jan 20 update:

great news from the lab :D way better zinc and ferritin status after corrective efforts in nov dec and early jan. improved copper-zinc ratio (see 4th/last study in viewtopic.php?t=30764&start=105#p255324), with room to do even better.

jan 30 update:

still all on the up and up. have done more research to assess how long will be safe at higher than usual zinc intakes. will go back to the doc in a couple months. might ask for the new requisition then, even if i don't run the tests till a bit later on.

feb 8 reflection:

overall, this experience of spasticity was unlike any previous. maddening. glad it's long gone now. magnesium might have contributed somewhat to improvements last year, but it was clearly not the main player.

feb 28 update:

weird! i had started to run low on zinc so was down to one a day (in addition to the multi) for a bit. noticed a couple of symptoms that i now am clear are linked to my zinc status. since i stocked up and bumped up the daily dose, things seem better. whew!

apr 10 update:

so alongside everything else, last yr at physical my doc found a lump and sent me for first super fun mammogram and ultrasound, results of which indicated possible concerns to revisit with a follow up in 6 months. after that came the events described above - the unsatisfactory bloodwork results in oct, followed by the whole annoying episode in nov-dec, and a whole lot of targeted supplemental nutrition effort. then in jan, feeling better, improved bloodwork. last month, the 6 month followup ultrasound. and finally, as of yesterday, results relayed on the phone by my doc. all clear. i would have been okay if not thrilled with no ominous change. instead, nothing abnormal whatsoever. love it.

apr 30 was the last day of high-ish dosing zinc (couple pills plus a couple multis) until i can get some updated bloodwork.
as of yesterday, i'm back to standard daily upper limit via supplements for the forseeable future.
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jimmylegs
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Re: bloodwork monitoring

Post by jimmylegs »

in the week ahead, i will be out of supplemental zinc other than my multi. will be interesting to see whether any conspicuous symptoms appear.

aug 11 update: the sh!t hit the fan. zinc supplies were not replenished until jun 24. without ready access to testing during COVID lockdown, i wasn't immediately brave enough to high dose. i guess going with a more conventional one zinc per day was too little too late. by jul 12 i was in a state. one month later i am still working my way out of the situation.

in the past week or two, i've been back up to 3 zinc per day and testing be damned. but, as per the aug 11 post below, testing is now on the agenda.
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jimmylegs
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Re: bloodwork monitoring

Post by jimmylegs »

family friend just received urgent instructions from the doc to start two supplements, right away! based on tests conducted monday afternoon.

one guess where the requested list came from :roll: :wink:

i am glad, given we can't just hop online to order our own requisitions for private testing here, that at least some docs will play ball (even if they do need to assert some authority, once *you* flag something *they've* been ignoring...)
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Re: bloodwork monitoring

Post by jimmylegs »

finally got a copy of the results this aft. i had to pare it down to one next step. one guess which essential nutrient was involved ;)
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Re: bloodwork monitoring

Post by jimmylegs »

after a focused one-month regimen, we are into a week-long washout period, in prep for some follow up testing. will be interesting to see what we'll learn once the new results are in!
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Re: bloodwork monitoring

Post by jimmylegs »

results are starting to come in now.

the main findings are that, predictably, being conservative with dosage doesn't cut it when therapeutic intakes are needed.

luckily, we have achieved sufficient cognitive improvement already to take on a certain short term high dose regimen safely, without requiring too much help from others - which would likely involve prescriptions and so on.

hopefully some time in the near future i can organize some testing for myself, too!!
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Re: bloodwork monitoring

Post by jimmylegs »

yay it's my turn :D called the doc yesterday and got my requisition by fax.

now for the washout. i'm a little nervous (given the events of the past few months as added to the may 24 post above) but if i stay on task, testing, results and informed next steps will happen soon!

also, this past sat we completed some else's short term high dose regimen mentioned in a more recent post above, and have switched to body-size-matched maintenance dosing for the next while. new testing for that person coming soon too.
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vesta
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Re: bloodwork monitoring

Post by vesta »

Greetings:

I just received zinc test results which look low. ZINC (absorption atomique) 12.6 umol/l Normal 11. to 24
or O.82 mg/l, Normal 0.72 to 1.57.
I will get no helpful info from my local MD. It looks like I need to increase my daily intake to 40 mg. Also Quercetin might help absorption?
Any ideas? Thanks, Vesta
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jimmylegs
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Re: bloodwork monitoring

Post by jimmylegs »

sounds good, then retest after say 1 month to check efficacy.
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Re: bloodwork monitoring

Post by jimmylegs »

went to the lab yesterday. very different xp but it went very smoothly all things considered. booked follow up phone appt for early next mo.
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Re: bloodwork monitoring

Post by jimmylegs »

i had to go back to the lab yesterday afternoon but if they tried to follow up today, i probably missed any attempt. i hope no news is good news.
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Re: bloodwork monitoring

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update: it turned out to be okay news.
today's instalment: crazy news. i have not seen a result like that one since waaaay earlier in the learning curve. as in close to 15 yrs earlier!
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Re: bloodwork monitoring

Post by jimmylegs »

results are in: i did it. flipped the copper zinc switch :D
also learned my 2020 attempt to nudge d3 a *little* higher is not so easy with my crazy hi-test stuff, which has clearly not lost potency. i wanted 'x', i got '3x'. note to self!
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Re: bloodwork monitoring

Post by jimmylegs »

last week, a person i'm helping went to the lab. there are a few works in progress, one of which has been vitamin D.

after disappointing results following various health professionals' instructions earlier this summer, we took things in hand via a short term loading dose of vit d3, followed by standard daily maintenance dose, then followed by a solid week+ washout in the run up to the recent lab visit. result was GREAT. better than expected, but not at all worrisome. thought we might need a second round, but no. all good after the first :D cofactor-tastic :D :D :D

as of this week, back to standard daily maintenance dosing.
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Jaded
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Re: bloodwork monitoring

Post by Jaded »

Not been here a while - sorry to hear you had health worries earlier this year JL. Glad you are ok.
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