This Is MS Multiple Sclerosis Community: Knowledge & Support

CF,

Thanks for the info.

hi px have you heard of any potential for nutrient depletion with copaxone? is copaxone a brand name or is that the actual pharmaceutical name?

re: supplements, good idea to bump up the d3!
5g of fish oil? how much vit A and vit D are in the product you take?
good for you re: ditching the hydrogenated fats. yuck!
how much calcium do you get per day?
have you read about balancing d3 and calcium with magnesium and zinc?

MAGNESIUM
word on the street is to get 600mg magnesium per day - good against general aches and pains, also against spasticity. but take 300mg with your d3, and the other 300mg at some other time of day. i learned to my cost the down side of taking it all at the same time as d3.
more about ms and magnesium:
http://www.direct-ms.org/supplements.html (actually i pretty much buy in to the entire embry supplementation list, but i would say less folic acid - i did 1mg and got neuropathic itching, my level skyrocketed to 2170!!! - and i would sometimes go higher on a few things - only when needed as a short term therapeutic boost)

ZINC
if you want to read up on zinc a bit, i started a zinc ms boys girls controls thread and if it sounds interesting fire away with any questions. i think it's really important for ms patients to be aware of their zinc level. ESPECIALLY if not eating red meat. if you aren't somewhere that testing is financially feasible, you can fake it yourself via this method:

http://www.msrc.co.uk/index.cfm?fuseact ... pageid=653
(the link has more detail but here's the meat of the test - the site has the evaluation info)
The zinc taste test is used to evaluate this common state of deficiency. This simple and non-toxic test was devised and developed by Professor Derek Bryce-Smith, Professor of Biochemistry at Reading University. Professor Bryce Smith is an established authority on zinc and numerous other biochemical topics.
The test solution is zinc sulphate in purified water, at a concentration of 1 gram/litre. Once prepared the solution should be stored in a refrigerator and discarded after six months. The solution should be removed from storage and left at room temperature for about two hours before carrying out the test.
The test is based on the knowledge that the functions of taste and smell are dependent upon there being sufficient zinc available in the body. Thus, if zinc is deficient then taste function will be diminished. This principle is utilised in the taste test by offering a standard test solution of zinc sulphate for tasting. The response is then compared with a series of defined standards and the zinc status thus determined.
The test involves taking a sip of the solution (approximately 5-10 mls - using the beaker supplied) and holding it in the mouth for ten seconds, timed with a watch. Due to the possible influence of recently consumed food or drink on the taste experienced it is essential that neither be taken for approximately one hour before the test.

CF did you catch that list of nutrient depletion concerns for gabapentin?

Ms Legs!
I have pemphigus foliaceous, it is considered a milder form that the vulgaris variety, and it doesn't sound as scary. The effects can be similiar, but does not attack the mucosa.
My first 'attack' put me in a burn unit while on a business trip. Briefly, the left side of my torso, blistered and sloughed off. So started my love affair with steroids.
Over the years the attacks became less and less severe, but I've plenty of bloody clothes from that time. You can't bandage these types of wounds, as a bandaid, no matter how lightly applied will peel many layers of skin with it. I still have bandaid shaped scars, and numersous skin biopsy sites from the long dx. process. I wound up going to the Unnniversity of Pa for dx and tx.
I wonder if the attacks from pemphigus dropped off because my immune system was busy attacking my myelin.
One funny thing about that time, they put me on a drug called Dapsone, as a steroid sparing drug. The only othere use for this drug is in the treatment of leprosy. of cours my pharmacy had to special order it. When it came in the pharmacy staff practically threw it at me to avoid touching me.
Right now , as I wean the steroid dose, it's coming back as blisters on my upper torso and head.
I'd rather have that than increased myelin loss if it's keeping my immune sytems occupied, don't know if that's how it works, but I can hope,...
My lifestyle has always been nutritionally sound, I supplement to a reasonable degree, preferring to get nutrition from food. One of my consistent foods in the winter is a barley stew made with collard greens, kale, turnip greens, spinach, green beans, chicken, tomatoes and bay leaf
Fresh lentil soup with many of the same ingredients is also always available.

JL,

Copaxone is the brand name for glatiramer acetate. It's the "other" DMD; Rebif, Avonex and Betaseron are forms of interferons, whereas this is a synthetic chain of amino acids. Have you really never heard of it? Either way, I don't know about any nutrient depletions associated with it.

When I was being worked up and it looked like I probably has MS, one of the first books I came across was Swank's. So, I've roughly been following his diet since then (though not entirely to the letter, since I still eat lunch meat turkey and chicken that was probably cooked with the skin).

The fish oil is a bottle of cod liver oil, and 1 teaspoon has 5 grams. I know it has 400 IU's of D, not sure how much A (I don't have it in front of me right now). I probably get very little calcium from diet (working on changing that), and the supplements I just started. I've been taking 600 mg, but I'll bump that up as I start increasing the vitamin D.

I've been loosely following the threads about mag and zinc; I'll look at your suggestions more closely.

Thanks.

WOW msm, what a tale. i'll have to have a look into that. i used to think i could get all my nutritional needs from foods too, but it's just not true when you're a vegan i guess! anyway that's changed now lol - that barley stew sounds like a fantastically nutritious concoction, good one.

px, i have heard of copaxone but i didn't know the glatiramer acetate part off the top of my head. can't hurt to have a hunt around, see if anything turns up

I am on the max dose of neurontin, 900 x 3 times a day, without it my life would be rough. I get burning pain in both my legs, pins and needles and a feeling liking the crinkly sensation of scunching cotton wool. I also take one 25 mg of amiltriptyline at night, this helps me sleep and reduces the "MS hug" on my left ribcage.

_________________
horse of a horse!
Diagnosed 2001, r/r.

h, do you take all those supplements that are reportedly depleted by neurontin?

I take omega oils (Udos) and a muti-vitamin, but nothing else. Should I be taking other things?

_________________
horse of a horse!
Diagnosed 2001, r/r.

hi hh, here's the list of suspects for depletion by neurontin

from other threads on neurontin:
http://www.thisisms.com/ftopic-6526-day ... sc-60.html
here is a list of nutrients that are depleted by neurontin (gabapentin). if you consider this drug for pain relief please also consider that it will subdue pain without addressing any potential underlying nutritional causes for pain or other neurological symptoms...
http://www.thisisms.com/ftopic-6553-0-d ... rasc-.html
nutrients depleted by gabapentin
-vitamin b6
-vitamin b9(folic)
-vitamin b12
-vitamin d
-vitamin e
-vitamin k
-biotin
-calcium
-L-carnitine

source (includes reference list)
http://www.publix.com/wellness/notes/Di ... n#Dni-Supp

if you want the supplement "low-down" for ms, let me know. it helps to know symptoms and also whether you have reasonably easy access to nutrition bloodwork for general musculoskeletal aches and pains, d3 and magnesium are big, magnesium for spasticity, and for burning pain likely the b-complex at least in part. if you want details, i got em, let me know! DIM is a great info source on supplements too.

JL,

I have been saving all the info you posted for me on all the medications. Thanks so much. I just gets so confusing when you start looking at the supplements out there. I don't know where to begin. This is what I am thinking.

multivitamin
Fish-oil
Biotin
Folic Acid

For starters.

CF

hey cf, a multi should have biotin and folic acid. is it the amounts of those you're worried about? not enough in a multi?
now i have to go review what i've sent you, because i can't recall if you said you had had your d3 tested!

JL,

I have not had my D3 tested. I also went back and looked back over some of your info and rethinking all of it.

I had surgery several years ago and had an issue with my hair coming out. Stress of surgery and anesthesia they said. I took a multivitamin, biotin, b-6 and folic acid just to get my hair to stop coming out. It worked great and I used a biotin shampoo.

I know I will need much more than that now. Funny how we automatically go back to what we know.

Anyway, I am making some charts in Word to make sure I get all the right supplements. I know I need to write down my MS problems too. I will google all of it and my meds to see what else to do.

I may be asking more questions if you don't mind.

Thanks,

CF

that's why i'm here cf, anything to help

Thanks from me too!

_________________
horse of a horse!
Diagnosed 2001, r/r.