NEW TO MS....PLEASE HELP!!! Supplements question

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NEW TO MS....PLEASE HELP!!! Supplements question

Postby cocolulu » Tue Mar 06, 2012 3:56 pm

Hello All,
My name is Maria and I'm currently under investigation for MS.
I'm 31 yrs old and have been a Type I diabetic for almost 25 years. My symptoms started with the diagnosis of cubital tunnel syndrome in my left elbow in the fall of 2010 followed by a lot of therapy that did absolutely nothing. Then, about a month and a half ago, I noticed needles and tingling in my left foot, the 3 toes on the outside. I scheduled an appointment with my endo thinking it's diabetes related...he sent me to have an EMG done (the test was normal) and after the results, he concluded it is not diabetes related. He then sent me to see a neurologist.
My appointment with the neurologist is tomorrow morning. However, from a month ago, when I first noticed the tingling and needles in my left foot, my symptoms have gotten worse....my left arm is very weak, I've been having blurred vision for 2 weeks, my whole body twitches, I have really bad back pain and I also started noticing extreme weakness in my legs.
I actually ended up in the ER last Friday because of the extreme weakness in my legs....they did an MRI of the lower past of the spine to ensure no injuries....the MRI came back normal....after that, they said my symptoms don't necessarily require urgent medical attention and sent me home....oh, they also said I should follow up with a neurologist.
Reading through your posts. I was able to find similarities in a lot of the symptoms. At this point I'm 90% sure it is MS.
I asked my GP to run some bld tests...The results were Vitamin D3 (25_Hydroxy) 13.8 ng/mL
I started taking 5000 IU D3 once a day. I also started taking 30 mg zinc ( I take the D3 and zinc together). I also started taking some Iodine supplements.

My question is, do I need to take any copper? If so, how much? Do I take them all at once (I usually take them in the morning with breakfast).
I have not taken any magnesium yet but I'm thinking of starting to. Also the Omega 3 & 6....how much do I need to take?

I'm really, really afraid!
This is a total shock! I would've never though that after so many years of battling diabetes, I have now yet another disease I need to face.
I'm planning my wedding...I'm supposed to get married in a month....this is supposed to be one of the happiest times in my life (our lives, because my fiance is as affected by this as I am)....I swear, I feel like my life is over!

Any advice/comment would be greatly appreciated.

Thank you very much!
Maria
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Re: NEW TO MS....PLEASE HELP!!! Supplements question

Postby jimmylegs » Tue Mar 06, 2012 5:01 pm

hi maria, welcome to TiMS. sorry to hear your scary story - but good to see you're hard at work investigating - being proactive is great. good for you!

so 25(OH)D3 = 13.8 ng/nL x 2.496 = ~34 nmol/L - not good at all! wonderful that you have started supplementing.

30mg zinc is also wise. in the long term, you'd need to balance it with copper. the brand i use sells a 25mg zinc with 1mg copper included, or a 50mg zinc with 2mg copper included, so if you can find a 1mg copper pill OR a blended zinc/copper product, i would think that might be okay.

did you have your iodine levels tested and they were low? have you had a zinc test too? magnesium?

if you add magnesium to your regimen, do not take it all with the d3. divide it up and take some with the d3 and some separately. i am not sure but it might be wise to do this with zinc also.

also when you add magnesium, you can do so via epsom salt baths, increased magnesium-rich foods, and then if you go to supplements choose the form very carefully. magnesium glycinate is one that your body can use well rather than insoluble forms that zip right through you.

fyi here's some extra reading on the importance of magnesium in diabetes:
http://www.mgwater.com/diabetes.shtml

also when you're stressed, it depletes your magnesium which can make you more anxious, and it goes on in a downward spiral. if you get your levels optimized hopefully you will be able to finish your wedding preparations with equanimity :D

as for omegas, i'd concentrate more on omega 3s than omega 6s. see if you can find a high potency source of EPA and DHA. i use this one at the moment
http://www.nutritionhouse.com/omega-ext ... -p-10.html

hth! :)
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Re: NEW TO MS....PLEASE HELP!!! Supplements question

Postby milesap » Wed Mar 07, 2012 5:17 am

Visit ccsvi locator at http://ccsvi-ms.ning.com/?xg_source=msg_mes_network.com and consider the treatment. In the US insurance may still pay for it but their clamping down and may not. If you have been recently diagnosed then ccsvi treatment may help with symptoms. Don't bother your Neuro about it, its a vascular problem that can help reduce symptoms, they don't support it. Also get a spinal tap that will help to confirm your ms.
Vitamins D, b12, coq10, chlorella, tumerac, magnesium and calcium.
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Re: NEW TO MS....PLEASE HELP!!! Supplements question

Postby cocolulu » Wed Mar 07, 2012 8:18 am

Thank you all for your prompt responses!
Here's the list of supplements I've recently started taking:

Vit D3 5000 IU once a day, in the morning with food....should I start taking it twice a day, considering the results?
Zn 30 mg & Co 2 mg (Jimmylegs, I checked the bottle of Zn and it had the Copper in it as well..:)..); once a day, in the morning with food
I also take a multivit from Germany, in a liquid form, that contains:
Thiamin 2.25 mg
Riboflavin 3.6 mg
B6 1.8 mg
B12 6.75 mcg
Iron 10 mg
I take this twice a day, before meal.

My family doc has run my B12 levels also....they were 915...she said they were a little high, however from the posts I've read here, they do not seem to be (am I wrong?)

I have not had the iodine, zinc, nor magnesium tested yet.
I'm seeing the neuro today....first appointment...I'm really, really nervous.....I swear, my anxiety levels are through the roof.

I will look into getting some of the Omega 3s today.

Thank you all, again for your responses! I'm learning a lot of new things.
Maria
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Re: NEW TO MS....PLEASE HELP!!! Supplements question

Postby jimmylegs » Wed Mar 07, 2012 9:20 am

heya! i would say, that since you are taking the zinc as well as 5000IU, try doing that for 3 months and then retest, before increasing your dose of D3.

great that your zinc product already has copper blended in - well done. you will likely still need to add magnesium to your regimen (in bath and food forms first, with a supplement form carefully chosen (ie glycinate), dosed and timed).

your b12 levels don't sound threateningly high or anything. but they do seem higher than one might expect, considering your intake from supplements is apparently less than 14 mcg per day. do you have lots of b12 rich foods in your diet?

fyi - be careful with timing since you take zinc and iron, since they compete with each other for absorption. also, since you are supplementing iron, a serum ferritin test may be wise.

hope you can arrange for some additional tests.

re your appt, take some deep breaths, you'll get through it just fine i'm sure! we'll be here when you get back :) ttfn
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Re: NEW TO MS....PLEASE HELP!!! Supplements question

Postby cocolulu » Wed Mar 07, 2012 11:09 am

Hey Jimmylegs,
I try to eat pretty healthy.
I have 3 servings of whole yogurt a week, usually for breakfast;
1 serving of veg a day (carrots, celery, cherry tomatoes, etc);
1-2 servings of fruits a day (raspberries, oranges, pineapple, green apples);
I eat seafood 1-2 times per week, usually shrimp, mussels, or oisters;
My dinners consist of soup 3-4 times a week (vegetable, chicken noodle, cabbage, beef veg, ckn veg, ckn rice, bean w ham, etc - my aunt makes them from scratch) but I always eat them with 1-2 slices of white bread.
I have a burger once every 2 weeks maybe...same for fries...also steak or some form of cooked pork once a week
i do indulge in popcorn, potato chips, chocolate, cake, crackers, etc 1-2 times a week.
Not sure what would raise my B12 to 915 pg/mL...I started taking the supplements after the test results, so I can't blame it on them....the reason I started taking them was because I went to this supplements store and the guy there recommended taking B12....he said the test results only show an instance of the blood work....but in fact, we're all clinically deficient....not sure what he meant by that...
Anyway, he said that B12 is water soluble so we eliminate it through urine...so it's safe....

My hemoglobin was 13.5
My calcium was 9.9 mg/dL

Thank you for your encouragements! I really appreciate it!
Maria
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Re: NEW TO MS....PLEASE HELP!!! Supplements question

Postby jimmylegs » Wed Mar 07, 2012 11:59 am

heya. crap. my browser just deleted a post i had been working on for a while.

short story, from a pro vs anti inflammatory perspective, it looks pretty good except for the bread, cake, crackers, sugar etc, which i am sure you already would suspect! :)

you may want to have a look at this list of healthy magnesium-rich foods - do you get at least a few of these in each day? http://whfoods.org/genpage.php?tname=nutrient&dbid=75

i think the seafood and beef might be combining to result in your higher b12 levels.

i could be wrong, but i think the guy at the supplement store meant "buy this product, so that i can make money". i met a teacher whose levels were high like that and her naturopath put her on b12 injections. cyanocobalamin, no less (ugh). i have been b12 deficient, so i know what it feels like when things are not up to par, and i personally would think it ridiculous to supplement when levels are higher than say, 500 pmol/L.

hemoglobin looks good according to klenner, and from anything i've seen your calcium looks good too!

no probs re encouragement :) we all need it!
ttfn
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Re: NEW TO MS....PLEASE HELP!!! Supplements question

Postby milesap » Wed Mar 07, 2012 12:47 pm

Don't forget to take chlorella its a natural green algae in pill form that removes toxins and some have experienced more energy with it. Take 3 times the normal dose, its cheap available from swansonvitamins.com
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Re: NEW TO MS....PLEASE HELP!!! Supplements question

Postby jimmylegs » Wed Mar 07, 2012 1:09 pm

chlorella is promoted as 'nature's richest source of chlorophyll'.

magnesium is the central ion in the chemical structure of chlorophyll (makes sense that it would help relieve fatigue)

magnesium is also used as a chelating agent. handy that it does several hundred other things for the human body as well :)

found an ingredient breakdown showing the nutritional profile of chlorella:
http://www.nutribiotic.com/chlorella-150tabs.html
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Re: NEW TO MS....PLEASE HELP!!! Supplements question

Postby Jim829 » Wed Mar 07, 2012 1:38 pm

Hey Maria, I was pretty much in your shoes a year and half ago. I was scared and when I heard the dx, which I knew was coming, I felt dispair. But then I looked around and saw a lot of folks with MS who were living pretty normal lives. I went on an intense search for the right supplements, diet, etc. to make sure that I was one of those people. I'm taking a number of supplements, including the ones mentioned here. I also started taking a vitamin called "Neuropower" I get on-line from Vitacost -- it has number of supplements and antioxidants in it. I also take n-acetylglucosamine, a form of glucosamine that studies have shown to arrest the progression of MS (at least in mice studies). I'm also on a disease modifying drug, Copaxone, but the biggest change I made and the one that seems to help me the most, is diet. I've eliminated foods that either contribute to intestinal permeability (leaky gut) or that contain proteins that potentially trigger an autoimmune response. So, no gluten (and I working on eliminating all grains), no eggs, no dairy, no red meat (although some folks, like Dr. Teri Wahls, say it is ok to eat red meat from grass feed animals), no soy, no sugar, no legumes, and no artifical sweetners or colorings. I eat a lot of chicken, fish, and vegetables! You sound like you eat a pretty good diet, but check out this 18 minute video from Dr. Wahls (posted link below)-- she is a physician who has SPMS and has come up with her own dietary protocol that, for her and a bunch of folks who follow her diet, seems to arrest the progression of MS - at least to a large degree. The best thing about the diet, even if you don't have MS, it contributes to overall health. If you need some inspiring stories of folks with MS continuing on with active lives, check out the page on Facebook called "Athetes Fight Multiple Sclerosis." Let me also put in a plug for exercise, which many studies have shown to be very benefical in combating MS. I know when I had my last relapse working out was very hard, but I tried do to what my body would allow. I always felt better after some exericse, and I beleive that the exercise got fresh blood flowing through my brain that in turn helped flush out toxins that may have accumulated there. Let me stop rambling and say that the treatment of MS seems to have improved by leaps and bounds in recent years, and the folks who are diagnosed now - and diagnosed early in their disease progression - seem to have a much better prognosis than those diagnosed even 8 or 10 years ago. You've taken the right step in being proactive in your approach. Stay strong, it will pay off for you. Best of luck and I hope your wedding does turn out to be the best day of your life. Here is the link to that video: http://www.youtube.com/watch?v=KLjgBLwH3Wc
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Re: NEW TO MS....PLEASE HELP!!! Supplements question

Postby jimmylegs » Wed Mar 07, 2012 3:39 pm

please note that many of the dietary strategies for ms just so happen to be likely to improve zinc status, which is very handy considering zinc has those hundred plus jobs to do in the body (like for example maintaining intestinal permeability - aka preventing 'leaky gut' - among other things), and it tends to be low in ms patients too, so it all makes good sense.

re dietary strategies: eg avoiding ingestion of foods known to interfere with zinc status (such as gluten, high phytate legumes) and increasing foods rich in zinc (red meat for example - although i can't find a study that compares zinc content in game meat vs grass-fed vs grain-fed beed, booo).
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Re: NEW TO MS....PLEASE HELP!!! Supplements question

Postby cocolulu » Thu Mar 08, 2012 1:16 pm

Thank you for the reply, Jim829! I really appreciate your input!

Jimmylegs, I noticed I definitely need to increase the Magnesium intake....I have almonds with me today!! ...:))

On the use of chlorella....WebMD actually states that :"“Autoimmune diseases” such as multiple sclerosis (MS), lupus (systemic lupus erythematosus, SLE), rheumatoid arthritis (RA), or other conditions: Chlorella might cause the immune system to become more active, and this could increase the symptoms of autoimmune diseases. If you have one of these conditions, it’s best to avoid using chlorella.".....uuugghhh.....I don't understand anymore..

Went to see the neuro yesterday....it was more of a routine check....he goes "you look to healthy for MS".....what the hell is that supposed to mean???!!!....he did agree that my symptoms are not diabetes related....he ordered a brain and neck MRI....he said only in case these two tests do not show "normal", he'll have me do the spinal tap...
I had him send me to the lab to run my Zn, Cu, Mg, B6, E.....waiting for results..

I've been doing some research on the different diets for MS...the say no dairy, no grains, no eggs, no legumes.....I'm a diabetic...how am I supposed to live? I do need carbs from time to time....what are some of the allowed ones? and I mean, specifically....is it potatoes? what can I substitute bread with?

Also, the diets mention no sugar....does that apply to fruits? what about pineapple, mango, grapes, plums? Pineapple has a very high IF Rating, yet again, is it ok?

How is one supposed to get any calcium if not from dairy? Is supplements teh answer?
I am simply overwhelmed with questions....I have sooooo many, I simply do not know where to start or if I'm even asking the right ones....
I want to be proactive and make the necessary changes in my diet right now, I just have no idea how to balance everything out...the food i mean...

In the meantime, my upper back is killing me, needles in my left hand, needles in my left foot, blurry vision in my left eye......but the neuro says "you look very healthy"??!!!! why??!!....because I did not walk in in a wheelchair or half blind??? What is wrong with these doctors??!!!....I'm having a terrible day.
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Re: NEW TO MS....PLEASE HELP!!! Supplements question

Postby jimmylegs » Thu Mar 08, 2012 3:24 pm

sorry to hear you're having a rough day :(

well done re the magnesium foods boost!

as for chlorella, personally i don't use it - just note the magnesium content, among other things. good catch on the pro-inflammatory aspect. found a couple of relevant articles:

Stimulation of cytokine production in human peripheral blood mononuclear cells by an aqueous Chlorella extract
http://www.ncbi.nlm.nih.gov/pubmed/17611933

Review: cytokines and the pathogenesis of multiple sclerosis
http://www.ncbi.nlm.nih.gov/pubmed/8872892

glad you got all those tests organized! good call :)

as for the confusing diet issue - try to focus on what you can eat, not what you need to reduce (notice i did NOT say abstain from absolutely 100%)

here are some ideas, just based on what i have picked up and applied personally..

1) basically, eat the highest quality unprocessed whole foods that you can. that should automatically eradicate a lot of added salt, sugar, MSG etc.
2) stay hydrated - choose water or simple herbal teas like mint, before processed drinks.

some ideas...

animal protein:
eat the highest quality lean red meat you can find, keep it down to 1-2 servings per week. work in game meat like venison if possible. (these are rich in zinc)
lean chicken and turkey are good, and so are fish/sushi and shellfish. many shellfish are rich in zinc too.
choose high quality servings of fish, like wild salmon or halibut, 1-2x per week.

veggies:
eat em up, lots and lots! raw, steamed, stir-fried, baked, yum! dark leafy greens like kale, swiss chard (boiled, 3min), spinach; dark salad veg like romaine; brightly coloured peppers and tomatoes; sweet potatoes and other root veg; onions, cabbage, and broccoli; mushrooms, go go go :D

fruit: eat em up! maybe not quite so much as the veggies, but they're still good. because of the sugar content you do have to keep an eye on the IF rating. some fruits are pro, some are anti, just make sure that overall you're decidedly on the anti-inflammatory side of the spectrum.personally, i'm not a big fruit eater. usually at best i will make a breakfast of frozen berry mix with some vanilla yogurt, sprinkled with anti-inflammatory nuts and seeds. i haven't had that in a while though.

nuts and seeds:
full of healthy fatty acids, protein, and minerals! i do things like top salads with raw sunflower seeds and whole flax seeds. you can put cashews into stir fries, etc etc. you do need to watch the phytate content with nuts, since phytates have the potential to bind up key minerals, but it's all about diversity and balance. there's good in those nuts too!

eggs:
they're pro-inflammatory yes, but a good source of nutrition. i eat eggs all the time but instead of putting them in a pro-inflammatory context, like a white bread beakfast sandwich with ham and cheese for example, instead i pour beaten eggs over sauteed anti-inflammatory veg like onions, peppers, mushrooms, and spinach. i don't feel guilty about sprinkling on a little shredded cheese either :)

grains:
brown rice is fine, brown rice pasta too. things like quinoa would be fine. and oatmeal.
limit bread, and when you do eat it, try to choose sprouted whole grain breads to help reduce phytate content.

legumes: i eat these, but within reason. not too often and not huge servings of all legume.

dairy: you can still enjoy this but keep score and balance out the IF for the day. i'm not a huge dairy consumer anyway. i do enjoy milk in my tea and cream in my coffee. i put a pat of butter on steamed veg at dinner. as i just mentioned, i might put some cheese in my breakfast eggs (very small amount, but extra old cheddar but packs a big flavour punch!)
as for getting your calcium, here's a list of healthy sources - http://www.whfoods.com/genpage.php?tnam ... nt&dbid=45 note the dark leafy greens in there - they are such great choices, for so many reasons!

at the end of the day, to restate, i think most of the things we're meant to avoid are things that deplete zinc, which is low in ms patients anyway. so, if you make sure your zinc status is optimal, as well as keeping score of your overall intakes with the IF score, IMHO you shouldn't be as susceptible to inflammatory responses associated with certain foods.
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Re: NEW TO MS....PLEASE HELP!!! Supplements question

Postby cocolulu » Fri Mar 09, 2012 7:31 am

Thank you very much for your input, Jimmylegs!!!

Do you eat pork at all??....my aunt made pork schnitzel yesterday...yum!!....I haven't had any yet, but took some with me for lunch today.....I was thinking of loading up on spinach...what do you think?

Also, found these crackers...Annie's Bunny Grahams Honey....one of the little bags has 1 oz and contains, as the label says: organic whole grain wheat flour, organic wheat flour, organic cane sugar, expeller pressed sunflower oil, honey, organic corn flour, organic graham flour, calcium carbonate, natural vanilla and graham cracker flavor, sea salt, baking soda, natural vitamin E to protect flavor." Then there's a note on the bottom saying:"contains wheat ingredients. Made on shared equipment that also processes egg, milk, and soy".....I could really use these for breakfast, together with some raspberries...what do you think?

Thanks a lot! You're offering great support through all this! I really, really appreciate it!
Maria
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Re: NEW TO MS....PLEASE HELP!!! Supplements question

Postby jimmylegs » Fri Mar 09, 2012 8:20 am

hi there :) no probs

i've never had issues with pork, but the breading on schnitzel is not something i would choose regularly, myself.
when i choose pork it is more likely to be tenderloin seasoned with rosemary and perhaps a little maple syrup :D delicious with roasted root veg and maybe brussels sprouts. i also enjoy things like pork souvlaki - kebabs sprinkled with lemon juice, oregano and salt for seasoning. excellent with greek salad.

those crackers definitely fall under the processed foods heading and as such i would not choose those as a meal component, but more of an occasional dessert/snack. personally i have been eating a couple of digestive biscuits a day lately, which are not all that different. i don't buy them, myself - they're just in the house so i end up eating them. but i really shouldn't be having them as often as i do :S my skin has been telling me i am doing something wrong lately, so i should probably be cutting those out :(....

a comparison based on inflammation alone, never mind other benefits of whole over processed foods:

graham crackers (use the serving size drop-down to adjust to 1oz)
http://nutritiondata.self.com/facts/bak ... cts/4948/2

poached egg (about half as inflammatory)
http://nutritiondata.self.com/facts/dai ... ucts/119/2

plain instant oatmeal (also less inflammatory - use the dropdown and select 1 packet for serving size)
http://nutritiondata.self.com/facts/bre ... als/1600/2

and last but not least, if you enjoy them, could a smoothie containing a healthy mix of fruits (apples, berries, cherries, citrus, peaches and pears), nuts and seeds be an option for you?

hope that helps :) yvw
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