This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello - I'm new here. My dear bf has MS - relapsing/remitting, but he seems to now be in a very bad episode and might have switched to progressive. Over the last year, we have been trying all kinds of natural supplements to help him. The really strange thing is that they all seem to make his symptoms worse. For instance, he tried curcumin. The first 2 days it seemed to help, but then after the 3rd day it made him worse - after a week of misery he finally quit and felt better. He also tried Glucosamine to help with his hip joints (got eaten away from prednisone) - and that was a nightmare - symptoms increased dramatically. The same was true of many other supplements. I think in many cases he was taking too much or too many at once. But in other cases he seems extremely sensitive or downright allergic to the sups.

The only thing he seems to be able to tolerate is a sublingual B 12 supplement that has 800mcg of B12 and a tiny amount of CoQ10. He can take this 2x a day and it gives him energy.

Thank-you for taking the time to read this and many thanks to anyone who responds.

Question:
1. Do any of you folks with MS have bad reactions to natural supplements and why would that be? And
2. How much oral B12 should someone with MS take daily? (tests showed that he was deficient years ago and he's never supplemented with B12 since.)

i didn't feel that thrilled about the effects of some herbal stuff i've taken. made me tired. i do really well with vitamin and mineral supplements however. b12 is an important one. has the bf reacted badly to any vitamins or minerals? has he had his levels tested in the things you've been supplementing?

Vanilla -- Fortunately, this site allows us members to subscribe to our personal hypotheses. As this site's "insulin girl," I think the fundamental problem in MS is excess insulin.

In the case of your BF, I bring that insulin perspective. You mentioned curcumin (commonly found in turmeric) -- turmeric promotes increased insulin production. Then you mentioned glucosamine -- glucosamine is a sugar-based supplement. Anything in the diet that becomes sugar (otherwise called glucose) in the bloodstream signals the pancreas to make more insulin. (In addition, I think that glucocorticosteroids eventually do the same thing.)

Each of us will have our own recommendations. Mine is that your BF should avoid any food or supplement that causes increased insulin production.

Best of luck to the two of you.

and after a re-read [tests showed that he was deficient years ago]... b12 deficiency is the differential dx for ms. you're supposed to diagnose ms after ruling out b12 deficiency as the cause of the problem.
when you're dealing with a b12 deficiency it's best to figure out why it's happening. there are a number of tests to figure out whether it's a problem with ability to absorb, or something that can be dealt with via diet or supplements as opposed to injections.
until you can get any more testing done, he should take at least 1000mcg sublingual b12 in a bioavailable format such as methylcobalamin or hydroxycobalamin, NOT cyanocobalamin. you get the sublingual kind because it goes straight into the blood without having to get absorbed in the GI tract.
when your b12 is down especially for a really long time it can hamper your body's ability to absorb other nutrients. like the rest of the b-complex. i would suggest a b-100 complex daily along with the b12. HTH.

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

I insulin is your issue try cinammon and alpha lipoic acid daily!

the b12/insulin tie-in:

http://www.ajcn.org/cgi/content/abstract/5/4/431


so it looks like if b12 is down, you can end up with a glucose problem. and if you're hyperglycemic for other reasons, b12 absorption will be more difficult. nutritional support of the adrenal gland might be useful in that case, but of course this is pure speculation without having any details. a couple of interesting tidbits:
http://www.jacn.org/cgi/content/full/17/2/109

http://jn.nutrition.org/cgi/content/abstract/131/5/1414


all that aside, do you have any clue why he might be b12 deficient? are any more tests planned?
JL

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Hi - thanks for your responses. Jimmylegs - No - there was never any explanation given as to why he was B12 deficient. He is not a vegetarian and eats meat so I thought it was the MS that was making him deficient (I've read that a lot of folks with MS are deficient in B12.) There are no more tests planned except for upcoming MRI's.

well v that sounds pretty crappy.

b12 deficiency and ms are 'supposed' to be two distinct conditions. as in, you don't diagnose ms if there's b12 deficiency in the picture. ms certainly should not CAUSE b12 deficiency. the two definitely have similar characteristics though, right down to the pattern of lesions in the spinal cord.

if the bf has no obvious lifestyle reasons why his b12 is down, i would think the docs ought to have been looking for other reasons for sure.

have you ever heard mention of a:
schilling test,
homocysteine test http://www.labtestsonline.org/understan ... lance.html,
methylmalonic acid (MMA) test http://www.labtestsonline.org/understan ... /test.html, or
parietal cell antibody test?

also FYI the normal range for b12 is a bit off. there should be some posting along those lines on here somewhere, from early 2006 when i first joined. even if they said he was normal range, that could be down around 220 pmol/L. if someone has ms, better to keep it up over 500pmol/L if possible.

so all in all, you may be interested in finding out which tests have been done and if they do have a 'why' of sorts, knowing why tells you how to deal with it, and when you do followup testing to check on his b12 status, keep in mind that 'it's normal' is not a good enough answer when you're sick! you want to know the number, the units, and decide for yourself.

finally, if his b12 level has been deficient for a long time, he has probably drained a bunch of things that usually need b12 in order for the body to process them properly.

depending what is going on, vitamin E might help him get some b12 to stick, and adding the rest of the b-complex could be useful also. sounds like you really need some answers though before you can figure out how to take it on.
HTH
JL

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Omigosh! I had no idea! Thanks for for info. Will investigate...

vanilla here is a list of nutrients that get depleted by corticosteroids like prednisone - if the bf has to take it again, maybe they can monitor his levels of these to make sure he has enough:

http://www.alkalizeforhealth.net/Lnutrientdepletion.htm
TYPE OF DRUG: Anti-inflammatories
EXAMPLES - NAME BRANDS: Betamethasone, Budesonide, Cortisone, Dexamethasone, Hydrocortisone, Methylprednisolone, Prednisolone, Prednisone
NUTRIENTS DEPLETED: Vitamin C, vitamin D, folic acid, calcium, magnesium, potassium, selenium, zinc

http://www.vrp.com/articles.aspx?ProdID=art2079&zTYPE=2
Studies show that these drugs decrease calcium absorption and increase calcium excretion.18 Also, a study with individuals with chronic airway obstruction showed long term oral steroid therapy is associated with decreased serum magnesium levels.19 Steroid medication has also been associated with low potassium in both animal and human studies.20-21
Studies in individuals with rheumatoid arthritis (RA) showed serum levels of zinc and copper are two other nutrients that suffer declines after corticosteroid treatment, and urinary excretion of zinc and copper is elevated.22 Additional studies on patients with RA receiving corticosteroid therapy also demonstrated a decrease in plasma selenium levels.23 Although the evidence appears incomplete or conflicting, some studies suggest that vitamin C and vitamin D may be affected by corticosteroid therapy.24-25
http://www.vrp.com/pix/NutritionDepletion_Table1.jpg

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

I have a cupboard full of stuff that didn't seem to do a thing except color my urine. Legs is on the right track with the mineral end of things. I have just started to take zinc magnesium and will start b-12 and d soon... Supplement what your missing. Test and re test to see where your levels are. Peace and health Mark PS Great posts Legs... keep them coming...

_________________
Plant a BIG Garden Live in the Moment

hey thx much mark i sure will, can't stop lol
here's something of possible relevance.. if the prednisone yanked the calcium supplies that could hamper any efforts to get the b12 up... so another reason to hit this from several angles, not just the b12 alone.

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

I think dark leafy greens for the calcium and fresh robin breast for b-12. Country life at its finest. Just kidding on the robin breast. I have a soft heart too. Heading out for the evening to hear the coyote pups that were just starting to get vocal. Its a wildlife haven in our yard. Peace Mark

_________________
Plant a BIG Garden Live in the Moment

Hi folks - new symptoms to report. My bf has been taking 2 sublingual Vitamin B12 pills per day (800 mcg each). At first they were giving him lots of energy and he was happy. Now it has changed and he is so drowsy he can hardly function. He normally sleeps for 4 or 5 hours per night. Now he's been sleeping double that - 10 to 12 hours per night. And could easily nap during the day a few times, too. What is going on? Do any of you get tired from your B12 supplements?

I told him to stop taking the B12 for a few days until he gets his normal energy back. Then to try introducing it again, only one pill per day. And to get his B12 levels checked the next time he sees his doctor.

I wonder if the sleeping is a healing reaction? Or is it a sign that the supplement is bad for him? Do you think the pills are helping or hurting him?

heya vanilla, isolated supplements can throw you out of balance. i am not sure whether excess b12 known to cause anything, but i certainly do know that it only went so far with me. i needed other nutrients badly to restore some functionality. if only it were as simple as a single nutrient.. but it's a complex job of juggling houses of cards while riding a unicycle.. :S !!!
okay clearly time i was in bed hehehew