This Is MS Multiple Sclerosis Community: Knowledge & Support

Ok...I was newly diagnosed with RRMS back in early February of this year (2008).

I started Copaxone in late February and haven't missed a dose. I exercise 2 - 4 times a week (30 - 40 minutes on the recumbent bike and do a few sets with my 20-pounders a few times a week for my arms/chest/shoulders etc.)

I'm male. 38. 5'9" and weigh in at about 155lbs.

Luckly I haven't developed any neuopathy or pain. I suffer from spasticity in my legs and the tightness and tone in my legs makes it difficult to move them correctly so I have balance issues and a random gait due to draggy feet. Sometimes I stumble down the hallway at work like I've had too many margaritas for lunch. My biggest symptom is the whole "Mad at Gravity" syndrome. If I am active or walking around for longer than about 10 minutes, I suffer acute fatigue in my back and legs and it feels like someone has turned up the force of gravity about 300%. My whole body feels heavy and it becomes difficult to walk or move. Its like I'm wearing 100lbs cement loafers and have a 200lbs ruck on my back. Only way to recover is to lay down for about 15 minutes and take all the pressure off my legs. After that, I'm ok for a little while. Wash, rinse, repeat.

I realize my symptoms are small potatoes compared to what a lot of you guys and gals are going through, but I wanted to share anyway and maybe get some advice.

When I was diagnosed, I did a lot of research. Found numerous articles linking MS related symptoms to high aspartame levels so I cut out diet sodas and anything that says, "Sugar Free" on it. Also found several articles that correlated MS with Vitamin D3 deficiency. I'm a computer nerd for my career and don't get out much in the sun, so it makes sense.

So...I'm specifically looking for advice on a good supplement regime to go along with my Copaxone therapy.

I have been taking the following supplements with my daily lunch:

One-a-Day for Men multivitamin
2000i.u. Vitamin D3 softgel
1000mg calcium
250mg Magnesium
1000mg Omega-3

I'm not entirely sure how well this is helping. I wanted to ask what others posting on this board are taking as far as supplements to help bolster their daily living and whether I need to be taking more or less of a certain complex or if I should add others to my regime.

Thanks so much in advance for your suggestions.

- KC

Hi KC,

I posted a similar question not so long ago,so you may find the replies i got useful:

http://www.thisisms.com/ftopict-6062.html

Also scan through the natural approach and regimens threads,you will find lots of interesting advice.

Yannis

Great, thanks so much!

Hey KC-
Welcome. Good for you, taking control of diet, nutrition, supplements and exercise. It's alot of work having MS, huh? You sound like my hubby...indoor computer nerd

I'd suggest:
1. upping the vitamin D to 4,000IU to help w/the leg heaviness and fatigue. Try to get some sun everyday, weather permitting. Even 10 minutes will help alot.
2. Add some zinc to your mag. and calcium for balance- 15mg of zinc is good.
3. Get good antioxidants from fresh, colorful fruits and veggies and a good multi with all the alphabet vitamins...I'll bet your one a day has most of them. Look into glisodin, the antioxidant catalyst.

wishing you the best as you get your program together-
AC

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

Thanks Cheer.....most helpful suggestions.



I plan on getting a potassium sup too, since my One-a-Day is only 100mg (3% RDA)

Multi has 15mg (100% RDA) Zinc so I should be good there.

Is 1000mg of Calcium enough to balance absorption of 4000i.u.'s of D3? Or should I step that up to like 1500 - 2000mg of Calcium?

B100-complex!

There are many supplements that you could add, IMHO most important is vitamin D (>1000IU/day, with calcium-magnesium taken different hours for absorption), omega-3 fatty acids (>2gr/day), vitamin B12 (methylcovalamin taken with folic acid) and some antioxidants!
Wife takes a wide range of vitamins and metals, antioxidants, carnitine, cysteine, inosine etc and feels as before diagnosed - thanks god - although she has had some very bad relapses the first few months!

PS:By the way I deeply believe a multivitamin is not good for MSers as it usualy contains high levels of copper and iron both high in almost all patient's blood that may be bad for different reasons!

I'd suggest curcumin, salvia and ginkgo. These last two have really started to help me of late. I haven't yet worked out the ideal dose but a combination of about 4.8g of salvia and several 120mg pills of ginkgo a day seems to to the trick in terms of reducing spasticity and tingling.

_________________
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,

DIM,

You suggest taking Vit D3 and Calcium/magnesium at "different hours".

I typically take all my vitamins at one time right after lunch. If I should stagger what I take and when...what do you recommend?

D at breakfast, Cal at lunch, Mag at dinner? Just trying to figure out if there is a better way to do things.

Also, the Walgreen's One-a-Day mult for Men has no iron (it makes my stomach knot up really bad so I typically avoid any multi with Fe in it) and only has 2mg of copper (100% RDA). It has B6 and B12 (150% and 300% respectively). Should I be adding more B12?

It would be cool if there was a thread where everyone, veteran MS'ers especially since their experiences are so critically needed to help us newbies get a handle on things, can just post what they take each day, the amounts, and what time of day.

Once again...I really appreciate all the feedback and suggestions.

- KC

I just looked up B100-complex:

Supplement Facts
Serving Size: 1 Capsule
Servings Per Container: 100

Amount Per Serving %DV
Thiamin 100mg 6667%
Riboflavin 100mg 5882%
Niacin 100mg 500%
Vitamin B6 100mg 5000%
Folic Acid 400mcg 100%
Vitamin B12 100mcg 1667%
Biotin 100mcg 33%
Pantothenic Acid 100mg 1000%
Inositol 100mg **
Choline 25mg **

** Daily value not established.

Other Ingredients: Gelatin, Cellulose, Magnesium stearate

That's a hell of a cocktail. Is it safe to take that much B series each day?

take some of your day's d3 intake at the same time as calcium magnesium and zinc. i think what DIM means is to take at least some of your daily magnesium intake at a diff time of day than the d3. magnesium on its own at bedtime is nice and relaxing. magnesium citrate is probably the most absorbable of the oral options. you could also try an epsom salts bath for absorption thru the skin, and i have recently heard of a topical magnesium oil which can bypass the GI absorption issues too.

yep! b-100 is about where you want to leave it for long term daily supplementation though. you can go much higher with b12 quite safely.

in the short term i've experienced dramatic improvement from taking a heavy b-complex regimen over a very short time period - i took the equivalent of 4 b-100s per day plus a few other things and it took me from useless near-hands, paying others to wash my hair for me, to functional hands that could type and play guitar again. i was very malnourished so nutritional measures were very effective for me

Take calcium with D3 with meals and magnesium before sleep, they compete (cal-mag) each other during absorption!
Also take extra B12 in methylcobalamin form as cyanocobalamin may be pro-inflammatory (in some cases) while methyl is anti-inflammatory and goes directly to your spinal cord or where it is necessary!
You can read extended FAQ at www.ms-diet.org.

Thanks so much guys....I'll move Magnesium to before bed with my baclofen and get some B-100 to take with my normal vit intake after lunch.

I hear what yer saying about playing guitar. I play myself and the thought of losing the ability to play makes me quite sad indeed.

Thanks again for the suggestions.

Next few days I am going to write wife's regimen as it is partially different from the beggining although some minerals and vitamins are always first aid.
She takes LDN but I am not sure if this is what keeps her situation stable or supplements, or exercise with vibro machine, or what else, hope all sufferers from MS have her luck, I remember those days a year ago she was unable even to walk normally, had numbness and dizziness and contiguous relapses from 12 Sptember until half February (LDN started before Christmas) and now she feels if not better at least the same as before her diagnosis - thanks god!
Hope you the best!