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hope you can get all better without the roids nenu!
WOOOOOOO HIJACK! lol
yes bob, dx'd feb 1 2006 the day before i was supposed to leave for two semesters in australia. all i wanted was to get rid of that niggling numbness in my feet so i could start my trip with a clean bill of health. worked out great
no i've never taken any pharmaceuticals, not even steroids for this. i was lined up for rebif and had got the baseline liver enzyme tests (sort of - the lab screwed up twice) but i backed out of the deal.
i go to a neuro periodically but he's a peripheral guy. he ordered all my dx testing and i only went to the ms clinic for confirmation (and to get funneled into the rebif track). the peripheral neuro asked if we could have periodic appts to see how i was doing. i guess that's good enough for the ms clinic because they don't ask me how i'm doing... at least they're in the same hospital so maybe they read my file.
so. my condition. i'd say, some improvement, some blips. when things get better, it's been associated with a lot of reading and a change in my nutrition programme. my blips are related to things that i missed at first. at the beginning i was all about vitamins and didn't really know anything about minerals.
i started to develop trouble with my throat later in 2006, but it has largely resolved with the addition of magnesium to my regimen. (my neuro sent me to a throat specialist after our last appt, but that is a whole other dumb story).
i had some transient cognitive problems in the summer of '07, which i would only notice while driving. by late fall i had requested a zinc test which came back deficient. i have been pretty slack getting into the zinc habit because i ran out and didn't replace it til, oh, yesterday.
i keep talking about going for my follow-up zinc test but there the requisition sits... still...
i don't know what got those cognitive issues started but i'm hoping that resolving the zinc deficiency will defend against another episode. and with luck it might fix my throat the rest of the way? we shall see.
i don't think the dx folks reckoned on how malnourished someone so normal-looking could be.
about scans... i was in one of my appts with that peripheral neuro, and we were done. he said is there anything else i can do for you today? and i said umm... can i have a follow-up mri? and he said sure, do you want spine in 2 months, or brain and spine in 4 months? and i said brain and spine in 4 months please, when i get back from my coop work term.
i bought my MRI CD from the hospital so i can compare my scans from dx to last year. how dorky is THAT. but, i am pleased to report that my spinal cord looks a LOT better. brain about the same.
Joined: Apr 21, 2008 Posts: 164 Location: New Brunswick, Canada
Posted: Fri May 09, 2008 9:17 am Post subject:
Hijack away!
Btw, upon further reading about burning mouth, it appears that it could be down to different types of it. Mine is barely present when I first wake up, and as the day goes on, it gets worse. Better again after sleep. From what I read, it is seen in diabetes and nutritional deficiencies... so, since I know I don't have diabetes, time to figure out what nutritional deficiency I have, if that is what indeed is causing it. _________________ Dx RRMS March 5, 2008. I achieved my dx in absence of a GP, by being proactive and telling my story. An ENT listened and ordered my MRI, leading to my dx.
Joined: Apr 21, 2008 Posts: 164 Location: New Brunswick, Canada
Posted: Fri May 09, 2008 9:42 am Post subject:
Yeah, the one where I got my compound from... I keep seeing it linked back to B's, namely B12. I do take 1 sublingual daily, however I'm wondering if this is as effective as the shots (I've heard yes, but who knows?). _________________ Dx RRMS March 5, 2008. I achieved my dx in absence of a GP, by being proactive and telling my story. An ENT listened and ordered my MRI, leading to my dx.
oh, sorry i thought the compound came from a naturopath, my bad for not re-reading.
so b-12. sublingual's just as good as shots. the thing about it is though, it needs the complex to work the best. your compound if i remember aright does not have the entire b complex. when i had b issues, i had been taking b12 for months and any improvement had plateaued.
so next, along with my b12 1000 sublingual, i took high dose b-complex for three days and bang, BIG improvement. HUGE. essentially, what i did was three b100 complex per day for three days. with extra b1 in the mix. oh i just went back and looked at your compound, that's perfect that it already has 300 b1 in it. (i threw in lecithin and a couple other things too - it was a modified klenner ms protocol). after that i backed off because the job was pretty much done.
you could try taking your compound vitamin and sublingual that you already take, then add a b100 complex with each meal, just for a few days, to see if it helps.
...just watch the folic, because you're already getting it twice daily. it might not be "sticking" right now, because some of the complex is not there for it to work with. but even if you do add the rest of the complex i wouldn't think you'd get *too* high in under a week - but if that itch starts, you'll know what it's from!
for minerals, i see zinc and iron in the list associated with BMS... your compound looks like it should be keeping you in good shape for zinc though. had an iron test lately?
Joined: Apr 21, 2008 Posts: 164 Location: New Brunswick, Canada
Posted: Fri May 09, 2008 11:17 am Post subject:
I have a blood work request sitting here to take to the hospital when I get a spare moment to breathe I had asked my GP to get my vitamin levels tested, so I'll be doing that probably next week. UGH blood work lol. _________________ Dx RRMS March 5, 2008. I achieved my dx in absence of a GP, by being proactive and telling my story. An ENT listened and ordered my MRI, leading to my dx.
i know how fun eh lol
i have impossible veins i can only get a butterfly in one spot on my right arm. it freaks them out because i have huge hand veins so they think it will be the same in my arm NOT EVEN
hello ladies not to but in or change the subject but have you ever tried to take an iv in the wrist there is a nerve that runs down your wrist and like one out of every 10 people or so will faint if they hit that nerve. Well count me in because the last rituxan infusion i took i almost passed out. i got pale white and as the lady was looking for the vein she was telling me this and she looked up at me and seen that i was about to go down and instantly removed the needle. LOL i didn't thnk it so funny then. later shannon _________________ "Never approach a bull from the front, a horse from the rear or a fool from any direction."
you know i never really thought before now to go looking specifically at those cognitive probs last yr and the timing of the zinc findings. i'm seeing plenty of brain links and a few optic links that make me think that clearing up the zinc issue will prevent recurrence. cool!
Joined: Apr 21, 2008 Posts: 164 Location: New Brunswick, Canada
Posted: Fri May 09, 2008 6:00 pm Post subject:
No need for apologies around here!
Hijack on! _________________ Dx RRMS March 5, 2008. I achieved my dx in absence of a GP, by being proactive and telling my story. An ENT listened and ordered my MRI, leading to my dx.
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I had asked my GP to get my vitamin levels tested, so I'll be doing that probably next week. UGH blood work lol.
