What do you think?

[seanlanefuller]

What do you think of this MRI pic? I can't seem to find anything like it on the Internet.
I had an EEG and MRI last week and I'm waiting on my neurologist to read them and schedule another appointment.
I had many blood tests. The only thing they found was D was a little low. Doc said that wasn't the problem but I've been taking megadoses (prescription weekly + OTC daily) just to make sure along with B complex, multi-vitamin, magnesium, calcium, and a pro-biotic. For over a month now.
I have several areas of my body with pins and needles, sharp pains, burning nerve pain, tinnitus, squeezing rib cage on left side and middle, fatigue, etc.
The assessment on my medical record currently says suspected demyelinating disease of the CNS. Also my psychomoto seizure disorder may have returned.
I am driving myself crazy waiting for my next visit to the neurologist. One more night of pain scares me. I'm so tired of being tired and laying there on fire and needles.
There are crazy blobs and nerve tracks or something in my MRI. No big shiny footballs just lots of little fuzzy ones.
What do you think is in the pic? Have you seen an MRI like it? I just can't find one online with fibrous detail like this. What they heck are all of the lines?
http://http://seanlanefuller.sdf.org/t2 ... x00018.jpg

[ElliotB]

When is your appointment with the neurologist?

[seanlanefuller]

He is supposed to review the tests Monday and then probably schedule my next visit Wednesday. This has been going on for so many years and diagnosed as such things as unexpressed shingles, etc. This last time has been very hard. This waiting is building up as bad as the chronic pain. I have looked at thousands of MRIs for something comparable. Maybe people just don't post their MRIs because they are personal.

[jimmylegs]

hi sean i am not an mri expert. i have no idea if this looks like yours in your estimation, or not. i am implying *nothing* about you with this link. just that a couple of images looked sort of similar to my eye on google image search.
https://www.hkcr.org/case.php/answer/inner_id,244
http://www.neurology.org/content/76/9/787/F2.large.jpg

re things i might be able to help with, can you share details of your supplement regimen, eg form dose and timing (in relation to other supplements) of weekly and daily otc d3. also links to product info and daily timing for b complex (ie is it a b50 complex or ?), same detail for the multi, mag and cal?

if they tested d3 can we assume they also did a few other things, and if so do you have serum ferritin, serum b12, and/or any other results on file? can you share the specific result the docs described as 'a little low' when it came to your d3 status?

[seanlanefuller]

Thanks jimmylegs. Vitamin D 25-Hydroxy was 11.5 ng/mL. I take 10,000 D3 every Friday and 1,000 every morning.

[jimmylegs]

ok good to know. clarification question: is the 10K weekly what the doc knows about, and the extra daily 1000IU/d OTC your own personal addition? did the doc recommend any of the rest of your regimen, or is that all you working on it independently?

next question(s): can you link to or share details re your
b complex (esp b12)
multi (esp the zinc form and dose in mgs)
cal (dose in mgs)
mag (form, dose in mgs, timing of intake in relation to d3 intake)

best to have all these ducks in a row when working on d3 status. to get into a serum d3 zone associated with lower ms / chronic disease risk, consider aiming for 40 ng/mL to start. can be trouble to try for that or higher without careful attention to cofactors.

[seanlanefuller]

My PCP Doc told me to take the prescription and add the OTC as well. The same doctor also told me to take a multivitamin (Centrum 50+) and a B complex. A different doc told me to add the Calcium and Magnesium OTC. I take everything together. It is all pills. So far, the neuro hasn't told me to take anything until after he sees my MRI and EEG. Thanks for the exercise. It helps to feel like I am doing something. It also makes me wonder about all of these pills I'm taking.

B-complex with Vitamin C, B12=12 mcg
one a day 50+, B12=25 mcg, Magnesium=110mg, Zinc=24mg, Calcium=120mg
Calcium Magnesium Zinc with Vitamin D, Calcium=333mg, Magnesium=133 mg, Zinc=5mg, D3=200IU
D3, D3=1000IU

Totals:
B12=37mcg
Zinc=29mg
D3=1200IU/day + 10,000/weekly
Magnesium=243mg
Calcium=453mg

[lyndacarol]

Vitamin D 25-Hydroxy was 11.5 ng/mL. I take 10,000 D3 every Friday and 1,000 every morning.

https://www.vitamindcouncil.org/testkit/
These are the ranges that different organizations in the United States use to say whether you’re severely lacking in vitamin D (deficient), mildly lacking in vitamin D (insufficient) or whether you’re getting enough vitamin D (sufficient):
Vitamin D 25(OH)D range guidelines from various organizations:

Deficient
Vitamin D Council, 0-30 ng/ml
Endocrine Society, 0-20 ng/ml
Food and Nutrition Board 0-11 ng/ml
Laboratories 0-31 ng/ml

The Vitamin D Council suggests that a level of 50 ng/ml is the ideal level to aim for. This is why the Council recommends that adults take 5,000 IU/day of vitamin D supplement in order to reach and stay at this level.
The Endocrine Society recommends taking a vitamin D supplement of around 2,000 IU/day to reach and stay above a level of 30 ng/ml. This is what the Endocrine Society recommends as the ideal level to aim for. Lastly, the Food and Nutrition Board recommends 600 IU/day of vitamin D supplement because they believe 20 ng/ml is the ideal level to aim for.

Chart showing estimated daily intake level necessary for change in serum level:
http://grassrootshealth.net/media/image ... single.pdf

[jimmylegs]

ok all good starting point info.

glad your docs are doing a bit to balance out d3.

centrum 50+ or one a day 50+ are okay but not awesome.

https://www.centrum.ca/products/centrum-men-50
https://www.oneaday.ca/en/products/mult ... ver_50.php

not a fan of not being able to see forms used in the composition. i want to see which form of zinc, which selenium, which magnesium, which b12, etc. that we aren't told, suggests they aren't the best forms available.

compare level of detail on this:
http://www.aor.ca/en/product/multi-basics-3
(link points to summary info, you have to navigate one click over to see label info)

not suggesting this product ^ is 100% awesome, but at least i know what i am dealing with vs being unsure.

had your docs tested your serum b12 status at all? i ask bc it's part of ddx for ms.

daily total cal mag ratio looks ok. *max* intake ratio is 2:1. you want to be between 1:1 and 2:1 ideally.
333+120=453mg Ca, 110+133=243mg Mg. for ratio, 453/243 = 1.86:1 not bad.

the issues here will be 1. whether you are able to absorb/retain that mystery form of supplemental magnesium, 2. to what extent you are spending that intake on managing the d3 input, and 3. whether your diet actually gets you to where you need to be for daily mag intake.

re absorption: typical OTC mag in combo products is low quality mag oxide. decent laxative, poor absorption. better supplemental forms include magnesium citrate (okay), magnesium glycinate (suits me best) and still others too.

re d3 interaction: best to take part of your daily mag at the same time as d3 and some away. that way the d3 can have one mag dose to itself, and the other mag dose can be for your body's other magnesium requirements.

re mag from diet: total daily mag intake should be between 7-10mg/kg body weight, and that's before making it deal with oral d3 supplements. so that 243 per day of supplemental mag covers off a person in the 50-75 pound range. try to make sure you get the balance of what you need each day, primarily from healthy food sources!

back to main regimen. mention of tinnitus always red flags zinc status to me.
not a bad shot of zinc in your routine overall, but it's easy to mess up zinc absorption depending on food and/or fluid choices. could be worth investigating this one a bit further.

and coming back to the min 40 ng/dl target to start mentioned above, with full attention paid to cofactors, here is the origin of that number:

Serum 25-Hydroxyvitamin D Levels and Risk of Multiple Sclerosis
"In analysis by quintiles, MS risk was ... lowest among those in the top quintile of 25-hydroxyvitamin D levels"
full text link: http://bit.ly/2k8n1Qb

top quintile was the group with levels greater than or equal to 100 nmol/L which converts to 100/2.496= 40 ng/mL.

i was thinking of dipping into the macronutrient side for a sec as well, but all this is enough for now i think

[seanlanefuller]

Thanks again for your advice. I will study it. my B12 was 292 pg/mL before I started taking supplements. It is in range, but I'm shooting for 400 pg/mL. You're right it is a lot to think about. I overdid it today and I'm really paying for it right now. It is hard to think. The problem is that I'm 6'7" and 250 pounds so I look like I could play football. I was doing volunteer work today and helping carry a bunch of stuff. I was doing okay just dealing with numbness and pins and tingling and bobble headed swaying then all of a sudden I had a big nerve spasm and my right leg gave out on me. I called it quits after that. I came home to lie down and was overtaken by fiery numbness in all of my favorite areas and a headache with a truck idling in my right ear tinnitus. Bed rest wasn't helping so I got up. I might try my Tai chi. The problem now is that my balance and fatigue is making it really hard to even do Tai chi. It is one of the few things that help. Sorry for complaining. I told my wife today that I'm not one of those guys who can just suck it up and not complain. She said I didn't complain much at all.

[jimmylegs]

ok good to know about the b12. 400 pg/mL is a lot better than 292.

i personally go for 500 pmol/L which converts to 500/.738 = 678 pg/mL.
pretty easy with a better diet and reasonable habits w supplements.

i havent spent anything like the same amount of time hunting down an evidence based optimal serum b12 level, as i have for other nutrients. b12 is the oldest news for me personally, and i wasn't as critical of sources back in early days. so the 500 pg/ml is based on one old and not particularly rigorous source, tough to even get a copy of, which based its claims on still older sources that i have tried and failed to verify.

i am sad to report that i personally have done irreversible damage from too many years with low to no b12 in my system. no longer a factor, luckily! but, stuck with stocking and glove peripheral neuropathy. so be it.

very sorry to hear you have had a rough day. you definitely sound like someone who would need more than your average joe nutrient intake to keep all tissues in good shape!

my goodness i just did some conservative math (7mg/kg/d) for your magnesium needs and it looks like at *least* 800mg is where you need to be.
here is a resource which will allow you to figure out per serving contributions of different healthy food sources of magnesium
http://www.whfoods.com/genpage.php?tnam ... #foodchart

if you are willing to entertain the idea of ANOTHER supplement, might be an idea to consider magnesium glycinate. http://orangenaturals.com/essential/mag ... g-60v-cap/

this is a mag citrate powder you can mix with water or juice, less soluble/absorbable than mag glycinate, but it's not another pill at least http://naturalvitality.com/natural-calm/

another option is the good ol' epsom salts bath (either mag sulfate crystals or mag chloride flakes)

from dr google, re some symptoms you have noted:
https://www.google.ca/search?&q=magnesium+exertion
https://www.google.ca/search?&q=magnesium+numbness
https://www.google.ca/search?&q=magnesium+spasm
https://www.google.ca/search?&q=magnesium+headache
i usually think of zinc first when i hear tinnitus, but:
https://www.google.ca/search?&q=magnesium+tinnitus
https://www.google.ca/search?&q=magnesium+fatigue
https://www.google.ca/search?&q=magnesium+complaining JUST KIDDING 3:)
there's good science for all of the above, i'm just being lazy.

ok that's me for now no wait one more thing. i just decided to check if a mag issue could show up on a brain mri. yup. random case studies only but the point is yes mag issues can show up on a brain scan. i have never seen such crap mag levels in my life as in these two cases!!

Severe hypomagnesemia associated with reversible subacute ataxia and cerebellar hyperintensities on MRI.
full text link: http://bit.ly/2jNeExz
"Serum magnesium was critically low (0.15 mmol/L; range, 0.70 to 1.10 mmol/L),
with a calcium of 1.59 mmol/L (range, 2.20 to 2.60 mmol/L),
vitamin B12 of 175 pmol/L (range, >179 pmol/L)," <- that's 237 pg/mL

Severe hypomagnesaemia causing reversible cerebellopathy
https://www.ncbi.nlm.nih.gov/pubmed/24838431
"A severe hypomagnesaemia of 0.19 mmol/L (normal values 0.70-1.10) was found. MRI showed diffuse, T2 hyperintense lesions in and swelling of the cerebellum. Symptoms, hypertension and MRI abnormalities significantly improved rapidly after intravenous magnesium supplementation."

ok NOW i'm done

[seanlanefuller]

Haha! Thanks again. I think I need to add the +complaining to all of my searches. This morning my chief complaint to my wife was that the front half of my right foot is dead and it feels like I'm walking on a wooden foot.

[jimmylegs]

hehehe
yea dead foot is sucky. glad it's more of a classic 'stocking' feeling for me these days. definitely had the times when i was only able to walk based on vibrations in bone, vs ability to actually feel the ground properly with my feet.
i hope you're considering upping magnesium intake after all of the above. i too was already taking it when i was having my very worst problems. it didn't seem like it would be the thing, but i tried it on the pharmacist's advice. things sorted themselves out so quickly, and reversibly when i played with it a bit, that it was just inescapably obvious it was the problem. upping my total mag intake plus dividing the dose to have some with d3 and some away really turned things around.
mag is not the only thing to worry about as you know, but still worth paying attention to.

[seanlanefuller]

After our chat I upped my intake on the Magnesium+ supplement to 3 times a day. The usage on the label says up to 3 a day. My new totals are below.

B-complex with Vitamin C, B12=12 mcg
One a day 50+, B12=25 mcg, Magnesium=110mg, Zinc=24mg, Calcium=120mg, D3=700IU
Calcium Magnesium Zinc with Vitamin D, Calcium=333mg, Magnesium=133 mg, Zinc=5mg, D3=200IU * 3
D3, D3=1000IU / 10,000IU

Totals:
B12=12+25=37mcg
Zinc=24+5*3=39mg
D3=700+200*3+1000=2300IU/day + 10,000/weekly
Magnesium=110+133*3=509mg
Calcium=120+333*3=1119mg
Calcium:Magnesium=1119:509

[jimmylegs]

ok careful. good that overall magnesium intake is higher.

BUT you have an issue with the combo products. first re cal and mag together, second re mag and d3 together.

1. re cal and mag.
the cal mag ratio is now outside the desirable 1:1-2:1 range, at 2.2:1. mag and cal compete with each other for absorption so when the ratio is off, it can be a problem.
i have been unable, personally, to deal with much supplemental calcium. i tried, but even at 1:1 i would end up with pain i interpreted as sore kidneys. i should probably try again; certain supplements that bothered me early on, no longer do so now that other levels have come up together. my biochem was really messed up for a while.

2. re mag with d3.
yours is a higher than average daily mag requirement given height and weight. if your mag intake is consistently also managing d3, then at least some is effectively diverted away from its other few hundred jobs in your body. if you can find a straight magnesium product and use it at a different time of day from any d3, that should do you more good overall.

it took me several years of trial and error with mag, to stumble my way onto a good product that worked best for me. as mentioned above, it's mag glycinate that i use most often now. for some reason, magnesium BISglycinate is not my friend. i like the idea of glycine, maybe i just can't handle two ???

anyhoo, hope that helps