This Is MS Multiple Sclerosis Knowledge & Support Community

Here here to docs not doing right by their patients by not looking at the whole person. At many mainstream, reputable, big name medical centers they are using "integrative" medicine to assist patient treatment on things from Alzheimer's to cancer. Some MS centers or docs are doing this now, but with primary MS docs being neurologist they are slow to come around. I don't understand why, if you look at the similarities to MS and Alzheimer's. Most MS patient's, myself included, have had to seek out a dietician or nutrionist on their own. These folks are not usually familiar with MS issues and they are not in harmony with the neuro's. I have not found anyone where I live to help me first hand, and that is a shame considering I live near Houston.

jimmylegs - it will take some time to go through all of the literature you've put in my syllabus. Thank you.
I'm especially curious as to the D3 vitamin. I've read what you said on many other places - that people with MS should maintain large doses of this vitamin in their blood (mine is only 37 ng/ml, i.e. lower range of normal).My last neuro, on the other hand, told me to cut down my intake of D3 by HALF around June since sunnier days are coming and the body produces suficient quantities of it on its own...

standingtall - no rant, you are absolutely right. There is no certainty with anything you try in MS. I'm even reluctant to use the expression " he/she CONTROLS their MS with...". Nobody can say whether their therapy, diet, exercise etc. is really what's keeping their disease at bay, and not pure luck or something else. As for me, I will use all of the above in hopes of taming this beast.
As for the medical system - yes, I suppose a little solidarity and cooperation could probably go a long way.

omfg, again! closed a different program and the whole set of browser windows went as well. grr.

so. one more time... :S given this:
serum vitamin 25(OH)vitaminD3: aim for at least 100 nmol/L (40 ng/mL). preferably 125-150 nmol/L (56-60 ng/mL). ...
i don't think you're in terrible shape at 37 ng/mL. what's your regimen been like, altogether? if you push higher with the d3, i'd hope you could get some mineral cofactor levels looked at as well.

re the switch up during summer, here's some relevant research for healthy controls

In vivo threshold for cutaneous synthesis of vitamin D3
http://www.ncbi.nlm.nih.gov/pubmed/2549141
"The minimal UVB radiation level that produced a significant increase in serum vitamin D3 was 18 mJ/cm2, a value similar to the lowest solar broadband UVB irradiance that generates previtamin D3 in vitro from the precursor 7-dehydrocholesterol (20 mJ/cm2)."

Influence of season and latitude on the cutaneous synthesis of vitamin D3: exposure to winter sunlight in Boston and Edmonton will not promote vitamin D3 synthesis in human skin
http://www.ncbi.nlm.nih.gov/pubmed/2839537
"Human skin or [3 alpha-3H]7-dehydrocholesterol exposed to sunlight on cloudless days in Boston (42.2 degrees N) from November through February produced no previtamin D3. In Edmonton (52 degrees N) this ineffective winter period extended from October through March."

fun local calculator:
VitD-ez Duration of Vitamin D Synthesis in Human Skin
http://nadir.nilu.no/~olaeng/fastrt/VitD-ez.html

things to note regarding the less healthy, (in these studies, FM patients - who share some of the same issues with vit d3 cofactors as we see in the average ms patient):

The relationship between serum trace element levels and clinical parameters in patients with fibromyalgia
http://link.springer.com/article/10.100 ... 008-0593-9
"Serum levels of zinc (P = 0.001) and magnesium (P = 0.002) were significantly decreased ... Association between serum zinc level and number of tender points (P = 0.008) and that between fatigue and magnesium level (P = 0.003) was found as meaningful. According to the results of this study, it was asserted that serum magnesium and zinc levels may play an important role in the pathophysiology of FM."

Bone mass and vitamin D levels in women with a diagnosis of fibromyalgia
http://link.springer.com/article/10.100 ... 013-2434-2
"25OHD levels were also similar: 23.0 ± 9.5 ng/ml and 24.1 ± 9.6 ng/ml. [JL edit: similar, yes. healthy, no] However, while controls showed the usual summer rise in 25OHD, fibromyalgia patients did not."

pretty fascinating stuff

Heheh, like I said, I always copy ( ctrl+C) the whole text before submitting or moving from the page. I've lost everything I'd written too many times.

My regimen is 4000 i.u. per day for the last 6-7 months. Before that (before the diagnosis of MS, after the ON) it was 1000 i.u. per day. Now they want me to, in June, cut it down to 2000 i.u., but I can't say that I spend a lot of time in the sun even in summer, so I don't really see the point. Especially with this information you mention about fibromyalgia patients, which very possibly applies to MS patients as well. I think I will continue with 4000 i.u. and have another D3 test in July or August. I will check with the neuro in June, no worries.
As for zinc and megnesium - I did not test for those, I will add them to the list. As for the B vitamin levels, I didn't test for those either, although I assume those are relatively normal since they are checked when diagnosing MS.

yep :S i always crtl-a ctrl-c before i hit submit, just in case.. but not when i'm using another program altogether.. grr multitasking :S

anyhoo, you'll want to keep a close eye on zinc given the ON dx never mind MS.

relatively normal, that's likely.. super fantastic, maybe not. could be worthwhile to go back over your dx paperwork and see what the b12 levels have been like in the past.
do keep these targets in mind going forward

serum vitamin B12: aim for at least 370 pmol/L (500 pg/mL)
serum vitamin 25(OH)vitaminD3: aim for at least 100 nmol/L (40 ng/mL). preferably 125-150 nmol/L (56-60 ng/mL). ...
serum zinc: aim for 18.2-18.4 umol/L. (~120 ug/dL)
serum magnesium: aim for .95-1.1 mmol/L. (or 2.3-2.7 mg/dL)
serum copper: aim for 17.3-18 umol/L (or 100-114 ug/dL)

please do consider adding a quality multivit/min as well as magnesium and zinc to your vit d3 regimen. there are a number of folks on the forum who have had side effects from high dose vitamin d3 without proper mineral balancing (i'm one). at a bare minimum take 100mg mag glycinate when you take your 4000 IU of D3. and then make sure you get plenty of other magnesium into you at other times via diet and/or an additional supplemental dose. magnesium with d3 and also away from d3 is advice that comes from an absolute lifesaver of a pharmacist, through me, to you.

dietary targets:
600mg daily magnesium http://www.whfoods.com/genpage.php?tnam ... #foodchart
40mg daily zinc http://www.whfoods.com/genpage.php?tnam ... #foodchart

hope that helps!

some relevant debate, if you're interested, melko: http://www.thisisms.com/forum/chronic-c ... 5-660.html

Hey jimmylegs,

a very good discussion indeed, I've been reading it for some time (here and there as much as I can from my work), I've only reached page 25, 26. It makes sense that d3 alone is not sufficient, I'll definitely test your zinc theory. As for all the other vital ingredients of the human organism, I suppose I'll check those too, if the money situation provides.

As for my question from the beginning of this entire post (would one accept a DMD without any symptoms other than the first one) , it seems the gods have answered my dilemma - I've been feeling some burning on my lower back,as if from a sunburn, with no explanation other than MS. My GP scheduled a meeting with the local neuro on Monday. I suppose that is a good thing, now even the 0.1% of doubt I had is gone.
yeeei.
One final thanks to everyone who patiently responded to my countless questions.

Does it have to be magnesium glycinate? Ive never taken this type. For those of us on lots of supplements, any recomendations on best price/quality brands and types of magnesium to take?

hi again when you get further along you'll find the magnesium element involved in the discussion melko

you might find this page on the neuropathies of deficiency relevant as well (i wish it included sections on more essential micronutrients, but the level of detail for what they have done is excellent: http://neuromuscular.wustl.edu/nother/vitamin.htm

good luck going forward!

zjac other than high quality nutrient dense food sources, the best form of supplement i have found to date is magnesium glycinate. magnesium bisglycinate is available, but it is too strong for me. magnesium citrate is ok, but not as absorbable. some european mineral waters can be quite high in magnesium, and bathing in magnesium salts may help as well.

Nice posts as usual Jimmy. I wish we had some high quality controlled trials for nutrition in MS

Thank you jimmylegs. A lot of research ahead of me. But first an attempt to make the first step towards a DMD approval.

For anyone taking supplements it is important to remember there may be other chemicals in the supplements. I take supplements but I choose to ignore the supplements with magnesium stearate. It is a hydrogenated oil which effects the bodies ability to absorb the supplement. Better to use a high quality supplement which will better be absorb by the body. Check out all the ingredients of your supplement and make sure you are comfortable with all of them. If you are looking for a quality supplement I usually get mine from Nutrigold.

http://www.buzzle.com/articles/magnesiu ... fects.html

http://nutrigold.com/