This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi All~

I've been posting here a bit over the last few weeks. My partner was diagnosed with MS back in February and he is currently on (and doing well with) Copaxone. In any event, the one constant symptom he has is a burning/painful right leg. He doesn't want to go on any prescription meds for it at this time as he doesn't find it to be debilitating, but we are curious about any supplements or other alternatives to try and relieve this symptom! It is most noticeable to him when he goes to bed (we've sort of learned that its when he is trying to unwind that it becomes most apparent). It also is the first thing to act-up when he gets overheated.

He currently takes Vit D and a multi.

Anyway, as always, thanks for all the support and we look forward to any suggestions you may have!!!


In Unity,
Charlie & Brian

he could try taking one b-100 complex with every meal and at bedtime for at least three days, then back off to one a day for a month.
you can get more complicated than that, but it's not a bad starting point.
b-group vitamins are great for diverse symptoms of ms patients, including burning feet/skin/mouth etc, and daily multi supplements are just not intended to be a therapeutic dose - only maintenance.
a good therapeutic jump-start of b-complex might clear up the burning. if he tries it, do let us know what happens!

Thanks Jimmy! I've also noticed that many people take magnesium...what are the benefits of that and is it something that could also help with the burning/painful leg?

hi there, magnesium is required for a few different processes in our bodies (hundreds) but i think the majority of ms sufferers benefit from its value in relaxing spastic muscles. it also helps promote sleep at night, some people report better bladder control, less pain, less muscle twitching, easier breathing, reduces anxiety, reduces dysphagia, that kind of thing. reduces menstrual cramping, too, for those who are interested
magnesium does so much good for so many things, you pretty much can't go wrong by taking it. if you take too much, it loosens up the GI tract... so if you're constipated too, then you're in luck
in your case, it doesn't sound like muscle pain exactly - more of a skin pain? but if i'm wrong then the magnesium might help you guys out too. not least, because it plays nicely with the vitamin d3 and together the mag and d3 work great on pain reduction.
i've typed this many a time before, BUT...
ms patients are advised (by embry) to take 600-1200mg soluble mag per day. soluble forms include mag citrate for example. insoluble (they'll really get you running for the toilet) include mag oxide. mag is easier to absorb from food. high mag foods include nuts seeds and dark leafy greens like kale. stress makes you pee out magnesium. so does coffee. no doubt many of us ms patients and supporters are stressed and/or caffeinated enough to benefit from replacing some of our lost mag
magnesium is also removed during water treatment processes, because it clogs up the works with mineral scale. so if you're on city water, you're not getting what you would normally in ground or surface water. if you don't have white buildup in your kettle, your water is short on needed minerals.
if you decide to try out mag, don't take it all at the same time as any daily vit d3, even though the two do need to work together on some issues.
do take some of the daily mag away from the d3, since d monopolizes the magnesium interactions in your GI tract and doesn't leave any left over for other important mag-dependent processes.
hope that's useful to you guys

Hi Chaz...
this is the toughest symptom for my husband. It starts kicking up at the end of the day, and continues until he falls asleep. Next morning it's gone for awhile. He has it in both legs, and finds that elevating his legs on the couch with some pillows helps a bit. He's also been practicing meditation, and trying to focus his attention on other stuff. Meds don't touch it for him. So sorry for your guy. I know how rough it is to see Brian in pain.

Another thing Jeff's learned is that exercise actually helps this, but the aftereffect comes a day later. A workout will hurt his legs worse the next day, but the burning pain will lessen for a couple days after that. He uses the elliptical machine, walks and does weights.

Some folks have found success raising their vit. D intake. We've gone from 2000IU to 4000IU daily. Jimmy's right, mag citrate really helps spasms....maybe that will help, too.
best,
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

cheer, sorry if i should know this, but what is jeff's b-vitamin regimen?

If you are talking about an interior burning, then I can tell you that alchohol makes mine worse. It can cause it, or if I already have it, drinking makes it worse.
Terry

no apologies needed, JL-
Jeff took 4000mcg of sublingual methyl B-12 for a year until last summer when a blood test showed his level way high....he takes 2000mcg now.

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Thanks everyone! He just started the vit b-100 complex regime yesterday and he recently started on vit d...so we'll see what happens!

oh...and the drinking thing is the same for him. As soon as he has a drink or two he notices the pain in his leg.

hey chaz, if he takes d3 he's got to take a mineral blend too - probably more than what's in the multi. calcium-magnesium-zinc would be a wise blend to add to the mix. plus some magnesium has to go in separately from the d3. very important!

Its only been about 5 days of Vit B-100 complex so I'm not sure if its mind over matter or not, but Brian randomly mentioned that yesterday the burning/pain in his right leg wasn't as noticeable as it usually is...he said normally when he's sitting for a while its all he can think about for a couple of minutes and he actually went all day at work without giving it a thought. Its still there, but he says its not nearly as intense.

Jimmy...are results usually seen this quickly? He did three days of taking it with each meal and now down to one with breakfast.

hi there chaz
yes a lot of the time effects are ridiculously speedy. short term high-doses of some nutrients, including b-complex, can be felt in days or even hours, when the body's in need. i'm very glad the b-complex seems to be helping brian so far!

if he begins to have any issues whatsoever with sleeping patterns, try moving the once-daily b-complex from breakfast to lunchtime. i don't think he's likely to run into a problem though - i only mention this because some people have experienced sleep disruption taking very high doses of b12 in the morning. more like in the 2000 range, not one or two hundred. just so you guys know though.

i would suggest if the pain starts to return, that he goes back to 4x b-100s per day for another three days and then back off to one a day again.

have you guys discussed adding a mineral blend, to balance with the d3 part of the regimen?

i started looking for interactions with b-complex, to find out if there is something else that could have been depleted recently - since it had less b-complex to grab onto when ingested - if that makes sense.

instead, i found reference to a study which i'll have to look at more closely. the title is interesting:

Metabolic vitamin B complex deficiency due to the administration of glucocorticoid.
http://www.ncbi.nlm.nih.gov/pubmed/5432880

i found this list of glucocorticoids on wikipedia:

-Hydrocortisone (Cortisol)
-Cortisone acetate
-Prednisone
-Prednisolone
-Methylprednisolone
-Dexamethasone
-Betamethasone
-Triamcinolone
-Beclometasone
-Fludrocortisone acetate
-Deoxycorticosterone acetate (DOCA)
-Aldosterone

I'll be quite interested to see which one was associated with metabolic b-complex deficiency.

JL

JL~

Brian has had three 3 day treatments of methylprednisolone since February. One was for optic nueritis, and the most recent two were for the pain/burning in his leg/right side (which, I should add, didn't start until after the first methylprednisone treatment). I wonder if that first round of iv methylprednisolone led to the deficiency...seems like it!

As far as the minerals...we haven't added mag or zinc yet, but his vit d contains calcium. We're actually going to the store tonight to get mag...and my mother swears by zinc, so we'll be adding that, too.

Jeez...crazy how everything is so connected. Its interesting.

We REALLY appreciate your help!

chaz, wow. i always shake my head when i hear this kind of story.
i couldn't find the full text or even the abstract of that study though - it's a kyoto journal guess there's no english translation. anyone have access and translation skills??? hehe
but wow, the fact that bri's steroid treatment preceded the burning, and the b-complex seems to be helping, that is nutty. and yes!- the way everything is connected gets more amazing and interesting all the time.
sorta neat coincidence the way these 3 day stints of b-complex megadosing kind of balance against those earlier 3 day stints of drugs.
i hope the mag and zinc work their way into the routine nicely too, and help bri out with more relief from symptoms!
let me know what you guys plan for dosages and timing with the d3, calcium, magnesium, and zinc.
no probs re: help - 's why i'm here

PS: i take it we all know that alcohol consumption depletes b-vitamins?

.... hmm optic neuritis you say. now that sets off my magnesium antennae.

so we know that magnesium is useful against spasms, and we know that optic neuritis is a pretty common presenting symptom in ms, and often one-sided too...

a spasm can mimic optic neuritis:

http://www.ncbi.nlm.nih.gov/pubmed/9677588
Unilateral accommodation spasm: a diagnostic pitfall!
...(spasm of the near reflex) is usually bilateral...
Unilateral accommodation spasm is rare and can mimic retrobulbar optic neuritis...

these spasms have been observed in dxd ms patients:

http://www.ncbi.nlm.nih.gov/pubmed/17366115
Semin Ophthalmol. 2007 Jan-Mar;22(1):29-31.
Spasm of the near reflex in a patient with multiple sclerosis.

low magnesium can cause reversible blindness in human patients:

http://www.ncbi.nlm.nih.gov/pubmed/9889044
Cortical Blindness as a Manifestation of Hypomagnesemia



i can't find direct research on magnesium and optic neuritis in MS, but it might be out there. in any case the magnesium might be one useful factor in the fight against brian's visual issues. good luck with the new regimen!