Not sure what to think

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
vortexmama79
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Not sure what to think

Post by vortexmama79 » Sat Aug 25, 2018 1:34 am

I have had all kinds of symptoms for a couple years. I just had a bunch of labs done and they were all within normal limits. I had my MRI yesterday. Of course Friday, so I wont know anything until at least Mon/Tues. Maybe I am reading too much into it but the girl helping with my MRI was so sweet and bubbly, but after when she was removing my IV she wasn't nearly as sweet. Kind of avoiding eye contact. My husband said I am overthinking it.
Did anyone find that if your MRI showed something they alerted you right away? Or did you have to wait as well, even if the MRI was indicative of MS?

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jimmylegs
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Re: Not sure what to think

Post by jimmylegs » Sat Aug 25, 2018 4:07 am

hi vm and welcome :)

what kind of symptoms have you had? what type of tests were run? do you have copies of all your results?

definitely don't read things into individuals' behaviours. there's a process to work through, and as for one tech you don't know what else might have been going on with her day in general right :) chin up!
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: Not sure what to think

Post by ElliotB » Sat Aug 25, 2018 6:00 am

The technician who did the MRI may not be/is probably not the one evaluating/reading the MRI. That is usually done by a specialist and possibly your doctor. Frankly without extreme scrutiny, it would be difficult to see plaques as the MRI might need to be examined frame by frame (mine was) which takes a bit of time.

There are many external events that could have caused the change in demeanor such as a disturbing phone call or an issue with a co-worker. Be patient and let the experts you hired do their jobs. In the meantime, enjoy your weekend!

vortexmama79
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Re: Not sure what to think

Post by vortexmama79 » Sat Aug 25, 2018 12:51 pm

Thank you for your words. I know I’m probably over reacting, heck I’m a nurse. Just hard waiting and wondering.
I’ve had the pins and needles, like falling asleep in hand and feet for a couple years. Lost my vision in one eye a couple times. Lots of stuff. I know when my Vit D levels are good, which is a feat in itself working nightshift, I feel better. He ran blood work for thyroid, vitamin deficiency, lupus, etc. All normal
I guess I’ll have to wait till Monday for the MRI. Ugh

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jimmylegs
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Re: Not sure what to think

Post by jimmylegs » Sat Aug 25, 2018 1:23 pm

hi which vitamin tests were run? can you share detailed results?
statistical 'normal' is a pile of bs, in my xp (and in the research too!) :)
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!

vortexmama79
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Re: Not sure what to think

Post by vortexmama79 » Sat Aug 25, 2018 1:57 pm

ESR <3
Rheumatoid Factor <10
CRP 1.1
T4Free non dialysis 1.3
Vit B12 420
Full CMP
Thyroid panel
ANA screen with reflex to Titer - negative

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jimmylegs
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Re: Not sure what to think

Post by jimmylegs » Sat Aug 25, 2018 2:16 pm

hi what are the units on that b12 resuit pls? pmol/l or ??
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!

vortexmama79
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Re: Not sure what to think

Post by vortexmama79 » Sat Aug 25, 2018 3:03 pm

Says pg/ml

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jimmylegs
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Re: Not sure what to think

Post by jimmylegs » Sat Aug 25, 2018 3:13 pm

ok - so you're not deficient in mainstream ie hematological terms, but it's a good idea to consider 500 pg/ml a lower cutoff for b12. that's 370 in pmol/l, but i still aim for 500 pmol/l to be on the safe side. a published case has been made for serum b12 of at least 500 pg/ml. in spite of that, i'm still personally working on nailing down a better evidence base for a level above hematological deficiency. as others have done, i'm starting in the cognitive academic literature. i'll see if i can link up to relevant recent finds.
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!

vortexmama79
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Re: Not sure what to think

Post by vortexmama79 » Sat Aug 25, 2018 3:15 pm

I appreciate the info. Is it best to take supplements for B12 or try to increase it in your diet?

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jimmylegs
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Re: Not sure what to think

Post by jimmylegs » Sat Aug 25, 2018 3:48 pm

no problem.

diet is always the best route, because it comes with built in essential cofactors. if you go the supplement route, taking single components of any complex throws its natural ratio out of whack. for this reason, when going the supplement route, b complex is better than just b12 - esp in the longer term.

now to get a little complicated:
it's important to be careful with supplements, including the b vits. i have a three a day b complex, but i usually only take one out of three. i like the product because the b12 fraction is high quality, highly bioavailable (methylcobalamin). but if i took all three in one day, it would max me out for safe daily supplemental b6 (100mg).
i dial back on the b complex, so that i can also fit in a high quality multivit/min and a few other things, without going overboard on supplements overall.

with that, let's revisit an emphasis on food sources lol
for that, i enjoy the level of relevant detail provided quickly and easily via this resource:
http://www.whfoods.com/genpage.php?tnam ... #foodchart

that reminds me, time to put together a batch of salmon pasta salad tomo, to have around for lunches in the coming week :)
i'm trying to like sardines. not there yet!!
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!

vortexmama79
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Re: Not sure what to think

Post by vortexmama79 » Sat Aug 25, 2018 3:54 pm

I’m all for the diet route. I take a basic multivit and Vit D. I work nightshift so it’s taken years to get my Vit D at a low normal level ;) Besides those I agree supplementation can wreak havoc on other co-factors. I look forward to reading your link.
Good luck with the sardines......yuck

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jimmylegs
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Re: Not sure what to think

Post by jimmylegs » Sat Aug 25, 2018 4:04 pm

ok diet approach sounds great for b12.
now re working on d3 long term. what has your regimen been for that? how much d3 have you been on per day? for how long to achieve your current level? what exactly was last d3 level? do you combine with, or separate from, the multi?
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!

vortexmama79
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Re: Not sure what to think

Post by vortexmama79 » Sat Aug 25, 2018 4:12 pm

I’ve been a night nurse pretty much all of my 16yr career. I take 1-2,000 a day. Sometimes I’ll skip a couple days if I get extra sun. I realized it was too low about 7yrs ago, just got it to “low normal” this year. My last level a few months back was 30 or 31 I believe. I just knew I was excited cause it was the first time it ever reach the low of normal :) I usually take it with my multivitamin. I eat a fairly healthy diet too

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jimmylegs
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Re: Not sure what to think

Post by jimmylegs » Sat Aug 25, 2018 4:39 pm

congrats to you for hitting 30 ng/ml! earlier this year my d3 level came back 20 ng/ml. i know better than to let things get into that state. my target is always to be in the 40-50 ng/ml ballpark.

since that crap result, i did a standard quick boost protocol, 50K IU per day for 10 days, which was advice i got from the hospital way back when i first started looking into d3. that protocol has worked very well for me twice in the past (dose response ranging from 'exceeded expectations' when general nutrient status was poor, to 'beyond tripled expectations' when general nutrient status was good). these experiences span more than a decade so i don't throw that protocol around lightly.

for context i've had some quite bad experiences with long term d3 at just 4K IU per day. 4K IU per day is what my doc has ordered most recently, but she's new to me. the one who had been through everything with me over the last decade, through dx and everything since, has retired. at least i know how best to deal with that kind of d3 intake long term now, including the warning signs if 4K IU per day starts to go wrong, and when it's time to take a break!

if you can do 2000 a day plus sunshine, you should be set (most especially if your cofactor status is good - even sunshine dose-response varies with cofactor status)! and if you feel gutsy, pull out the stops and go for 500,000 IU spread over 10 days lol. as mentioned above, i literally just finished doing that last month. no harm no foul. also, no follow up level as yet. i need to make the appointment and get the requisition :)
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!

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