ok that was a headache

A forum to talk about the general challenges of daily life with MS.
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jimmylegs
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Re: ok that was a headache

Post by jimmylegs » Sat Mar 24, 2018 5:40 am

had brain mri yesterday, they were only running an hour or so behind yay.
contrast agent for second time (first having been for dx 12+ yrs ago). we shall see what we see!
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!

Zyklon
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Re: ok that was a headache

Post by Zyklon » Mon Mar 26, 2018 3:09 pm

Updates? :)
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!

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jimmylegs
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Re: ok that was a headache

Post by jimmylegs » Tue Mar 27, 2018 4:12 pm

heya, nothing special so far. i haven't checked for the mri results yet but they said i should be able to pick up a disc this week. follow up appt w family doc not til first week of april.
in the meantime have been doing my little eye exercises and being good w regimen, but no particular change yet. the rehab study was for 4 weeks so i'll just have to exercise my patience as well ;)
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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jimmylegs
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Re: ok that was a headache

Post by jimmylegs » Wed Mar 28, 2018 3:17 pm

HEY i think i have some progress. exciting!!!!!
i was getting a little bored with the eye exercises and no difference (why yes, this *is* only the third day since starting... i may not be the most patient person ever).
i decided to try adding a vertical nodding kind of element to the hard right-gaze stretch for the left eye. it does feel quite different, esp with chin lowered.
not perfect yet but now, with both eyes open, i'm much closer to seeing a single chimney on the neighbour's house than i have been since this whole issue started!
as noted above it's only been a couple of days since finding the exercises, and who knows if this is just when it would have started to resolve on its own, BUT i am very encouraged right now :D :D :D
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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jimmylegs
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Re: ok that was a headache

Post by jimmylegs » Thu Mar 29, 2018 6:35 am

yesterday's gains seem to be holding :D still needs a lot of work but i'm very pleased
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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jimmylegs
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Re: ok that was a headache

Post by jimmylegs » Sun Apr 01, 2018 9:31 am

ok i picked up the mri cd thurs pm and just dug it out to view this aft. i've only looked at the comments so far. i am definitely *not* among those who get INO without a detectable lesion. i will need to take some more time to dig out the previous disc to which the reviewer makes comparison, absorb this year's comments, and get into the image side of things.

jan 2019 edit

Prognostic factors in multiple sclerosis: role of intercurrent infections and vaccinations against influenza and hepatitis B
https://link.springer.com/article/10.1007/s100720070025

Abstract
Since the first historical description of multiple sclerosis (MS) it has been known that febrile illnesses frequently trigger relapses of the disease. In spite of this knowledge, vaccination against influenza has been hampered for a long period by neurologists on the basis of anecdotal cases of post-vaccination encephalomyelitis. Randomized, double-blind, placebo-controlled studies during the past decade have shown that influenza vaccination of MS patients neither increases the relapse rate nor worsens the course of the disease. In contrast, the reduction of viral infection episodes leads to a lower number of exacerbations of MS. Influenza vaccination is safe and should be recommended to MS patients in order to avoid attacks of the disease.

After publication of case reports of hepatitis B (HB) vaccination followed by onset of MS, a media-driven scare campaign mainly in France was conducted. The French health authorities decided to suspend routine vaccination of adolescents in schools, invoking the “principle of precaution”. This fact has caused widespread confusion and concern about the HB vaccination. Epidemiological studies in large populations have recently been performed to investigate a possible link between HB vaccination and MS: all results argue against a causal relation between HB vaccine and MS or other demyelinating diseases. Since the vaccination provides complete protection against hepatitis B and its severe long-term complications, the World Health Organization recommends continuing the implementation of the HB vaccination program.

i was diagnosed shortly after a hep b travel vaccine. i was really worried about having the shot at the time, but it had to be done for my academic exchange. i suspect my immune system was so poorly nourished (as it was when the whole INO issue happened) that it may have helped set things off. when i was diagnosed, my neuro said the timing was a coincidence. at that time, this would have been a pretty recent publication:

Vaccinations and Risk of Central Nervous System Demyelinating Diseases in Adults (2003)
https://jamanetwork.com/journals/jamane ... cle/784047

It is difficult, however, to infer causality from individual case reports. The reported cases may simply represent coincidental temporal associations with vaccination.
Conclusion Vaccination against hepatitis B, influenza, tetanus, measles, or rubella is not associated with an increased risk of multiple sclerosis or optic neuritis.

i found the above after running yet another search for influenza demyelination

more case reports (vaccine not in the search terms, just all over the search results)

male toddler:
Adverse neurologic reactions after both doses of pandemic H1N1 influenza vaccine with optic neuritis and demyelination (2011)

male senior:
Post-influenza vaccine chronic inflammatory demyelinating polyneruopathy (2008)

'two cases' (no details in abstract)
Bilateral anterior ischemic optic neuropathy following influenza vaccination (1998)
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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jimmylegs
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Re: ok that was a headache

Post by jimmylegs » Fri Apr 06, 2018 10:55 am

went to the doc for chats about mri, next steps, and updated bloodwork requisition.

mri chats = push to see neurologist, discuss new treatment options.

re next steps: 'can i interest you in *western* medicine?' (um i'm pretty sure most of my research resides quite firmly in the 'western' sphere but thanks for condescension..) i said i'm open to the conversation but not to long term pharma 'disease management' approaches.

bloodwork: i picked up year old lab results which i'd put off collecting, being 'too busy with work'. stupid stupid stupid. levels terrible and won't have been getting better throughout the past year of relative inaction.

what a pain that with mere days remaining at the end of my job commitments, the wheels came off. really? couldn't have waited another week? but i guess i needed this wake up call. again.

marching orders to self:
1 month of best behaviour food and supplement-wise, with special attention to zinc and vit d3 based on old test results.
one week washout, then retest those plus the rest of my more complete little panel.
also, NO DILLY DALLYING with results this time!!!
and lastly, tweak as needed based on updated results
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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jimmylegs
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Re: ok that was a headache

Post by jimmylegs » Fri Apr 06, 2018 4:08 pm

the eye rehab work is fascinating. think i got things to a new level today. it's a big deal to maintain distance focus with my chin dropped vs raised. now if only i can get right shoulder check to behave as well!
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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jimmylegs
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Re: ok that was a headache

Post by jimmylegs » Sun Apr 08, 2018 12:06 pm

more progress! i went to a local trail where i can check focus with chin up *and* chin down at a real distance. achievement unlocked! still busy with the right shoulder check quest however.
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!

Zyklon
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Posts: 339
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Location: Turkey

Re: ok that was a headache

Post by Zyklon » Sun Apr 08, 2018 3:10 pm

gogogo :)

Why do you do washout for one week?
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!

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jimmylegs
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Re: ok that was a headache

Post by jimmylegs » Mon Apr 09, 2018 4:32 am

i will thanks :D

short answer, washout is to prevent most recent supplemental intakes from clouding background status.

long answer:
when i was silly pre dx, even so i had b12 on my radar due to diet and i monitored my levels. but i actually used to take b12 before my bloodwork. levels always came back low normal, but i knew from changes in symptoms that it didn't reflect my true status quo. out of curiousity i did a washout before testing once, and the b12 levels were undetectable - test was sensitive down to 75 pmol/l and the lab report said 'less than 75'.

iater when things got dire and the ms tests were done, i argued against the ms dx.
'no i'm b12 deficient'.
'but your test came back 300 pmol/l'.
'i've been supplementing like mad because of all this crazy new sensory loss'.
'so do a washout for us and retest'.
'no i'm terrified to stop now that things have gotten so much worse'.
and the rest is history.

there are other weird things to consider also, re bloodwork. eg coffee before testing can affect serum uric acid results, making them look higher than they really are.

also, morning fasting serum zinc is the highest level of the day so when i test that way, which i always do for comparability's sake, i have to be aware that it's my best possible result over a 24 hour period. makes my last serum zinc result, 12 umol/l, look even worse than just 'low normal' (it's actually great per the local lab but not per the hospital's system, which is more consistent with research)

with my zinc that low i can imagine my serum uric acid levels were crap too, but i don't have that on my next requisition. my old doc retired and i'm working in a new one. very slowly :S lol
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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jimmylegs
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Re: ok that was a headache

Post by jimmylegs » Thu Apr 12, 2018 3:59 am

ok so the other day, one month to the day since this all started, i called the doc to say i'm feeling ok to drive again. she said no, wait and see if you can get approval from the specialist next week. i just keep dutifully supplementing and working on the eye exercises in the meantime.

at this point i can feel magnesium status reacting to the increased d3 intake. definitely going to increase mag intake a bit more.

things are still improving with the last little fragment of double vision. i can still feel eye stretches working, so am still expecting things to resolve even further as long as i stick to the routine :)
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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jimmylegs
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Re: ok that was a headache

Post by jimmylegs » Tue Apr 17, 2018 10:47 am

clear to drive woot! lol
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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jimmylegs
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Re: ok that was a headache

Post by jimmylegs » Sat Apr 21, 2018 4:24 pm

i went out today and in review i don't think it even crossed my mind that i might have something to be concerned about. right back to normal, crazy.
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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jimmylegs
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Re: ok that was a headache

Post by jimmylegs » Mon May 07, 2018 3:41 pm

one-week washout complete today :)

fasting am bloodwork tomorrow, then back on the regimen like a good girl. regimen revisions pending results from testing.

am also making a point of getting in the midday sunshine hours. right now, at this point on the globe, 'tis the season!
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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