Welcome to ThisIsMS

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Re: Welcome to ThisIsMS

Postby CureOrBust » Fri Nov 08, 2013 12:55 am

welcome and hope to see some posts.
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Re: Welcome to ThisIsMS

Postby DebbieB » Sat Nov 09, 2013 5:53 pm

Hello everyone! I'm new to the site and already appreciate the information that I'm reading. Intend on looking more into "emotional lability" or Pseudobulbar affect, as I had an embarrassing meltdown at work this week. Was totally out of control crying and couldn't regroup. Very embarrassing and I have no doubt this will have a bearing on how my colleagues perceive me in the future. MS in not new (since 1988), now secondary progressive. In double-blind trial for Tysabri (for use in secondary progressive), unsure (but suspect) that I'm on the drug.

Thanks for all the info I've obtained already. This is exciting!
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Re: Welcome to ThisIsMS

Postby Tippy » Thu Jan 02, 2014 8:25 pm

Hi Everyone, I am new to the forum. My first episode was in 1975 with Optic Neuritis, but I was not diagnosed until 1993 with RRMS. Until about 5 years ago, I did not have any significant disability, but have progressed to SPMS, so no relapses, only progression. I have never taken any meds, and have only relied on diet until now. I was accepted in the Tcelna study, and had the first infusion in August, and have had 4 so far. Next appt. is scheduled for early February. So far improvements, and no reaction to the infusions, I feel like I am either getting the placebo, or it is just not working. I have continued to progress, my as walking continues to decline, as well as bladder and bowel issues..
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Re: Welcome to ThisIsMS

Postby jimmylegs » Fri Jan 03, 2014 6:39 am

hi tippy welcome to the forum. were you on a specific diet? what's a typical day like, food- and fluid-wise?
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Re: Welcome to ThisIsMS

Postby Tippy » Fri Jan 03, 2014 11:11 am

Hi jimmylegs,
I followed the MS Diet Book - Swank Low fat diet. I don't eat red meat, butter, cream, anything with palm oil shortening, most cheeses, or chocolate. :( Currently, I eat hearty oatmeal with fruit for breakfast, veggies and sometimes chicken for lunch, salad, piece of fruit and yogurt for snack, a hot meal with chicken or fish, with veggies for dinner. During the winter months, I try to have either an orange or grapefruit daily, to keep my immune system in tip top shape. Lots of veggies in the summer, we have a wonderful garden. I take 1000mg of vitamin C, 3000IU vitamin D3, 400mg magnesium, B-100, 300 mg Agal DHA900. I have a problem with my thyroid and take .125mg synthroid. I have tried to stay as active as possible, I won't let what abilities I have go without a fight. Which means that I have done face plants when my left leg gets wooden, which is embarrassing and frustrating. I still contradance (barn dance) most Saturday evenings, but have to sit down for a dance or two, depending on what I have done that day, and yes I have fallen, but just get up and keep going.
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Re: Welcome to ThisIsMS

Postby jimmylegs » Fri Jan 03, 2014 12:08 pm

hey there :D ooh what do you grow in your garden?

although i am not a fan of diets per se, overall your dietary regimen looks pretty good - what vegetables do you tend to eat most regularly, on a daily or near-daily basis? given that you have eliminated red meat, what is your major daily source of dietary zinc?

your supplement regimen looks decent too - what form of magnesium is your supplement? do you take the vitamin d3 all at once, or in divided doses? do you take it at the same time as magnesium, or separated? have you considered a multivitamin?
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Re: Welcome to ThisIsMS

Postby Tippy » Fri Jan 03, 2014 2:21 pm

Hi again!

I take Magnesium Oxide, and take all vitamins at night, except B-100 and agal 900 DHA, which I take when I get up in the morning. I take so many other things, that it was getting a bit crazy, so I dropped the multivitamin, although I may add it back now that it is winter.

I add pumpkin seeds (zinc), pecans (zinc) and sunflower seeds to my salads, as well as swiss chard, carrots, and scallions. Often we have broccoli, green beans, stir-fry veggies, mushrooms, and winter squash. I still have a laundry basket full of winter squash, from the garden, along with a gallon bag of carrots.

We grow lots of veggies.
Squash: summer squash, zucchini, butternut & acorn
Tomatoes: full size & cherry
Carrots
Scallions
Broccoli
Swiss Chard
Peppers
Beans: Green & Yellow
Cucumbers
Lettuce - Mixed variety (loose leaf type)
Snap peas
Radishes
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Re: Welcome to ThisIsMS

Postby jimmylegs » Fri Jan 03, 2014 2:57 pm

hallo :D

have you ever heard of magnesium glycinate? it's far more soluble and absorbable than magnesium oxide. could be beneficial against fatigue, pain, any spasticity or stiffness.
sample product link (not the exact one I use, but still mag glycinate) http://www.iherb.com/magnesium-glycinat ... 21315?at=0

sounds good re adding back the multi - there are so many important trace cofactors in there.

fyi. taking your d3 and magnesium all at the same time can cause issues. especially if 1) dietary intake is low and 2) absorbtion from supplements are suboptimal. basically it's great for the d3, terrible for the magnesium aspect. question: does your daily intake of magnesium come in one pill, or two? if two, try taking one earlier in the day. and the other at the same time as the d3. d3 monopolizes magnesium when taken together. magnesium intake is meant to work on a few hundred jobs in the body. when it gets monopolized by d3, other processes may suffer. I learned about this particular issue the hard way :S NOT FUN.

now as for zinc. have you ever had testing done to ensure your serum zinc level is up at the top of the normal range? healthy controls tend to have very high normal zinc levels, while ms patients average low normal serum zinc. (which means of course that some would be mid normal range while others would be deficient). the virus finding you mentioned (which one, did they say?) makes me wonder if your zinc status is adequate. it can be tough to absorb given that your sources are all vegetable.

your array of veggies sounds delish :) and I like the sounds of your nut and seed choices. almonds walnuts cashews and brazil nuts also offer some beneficial properties.
also. have you heard that putting mushrooms in sunshine (or under a plant light) can increase their content of plant vitamin d (D2) by 100x?

swiss chard is MY HERO (spinach too). do you always eat it raw? it's easier to get more nutrition out of a serving if you boil it. that way you can eat a full cup of cooked dark leafy greens without ingesting too much oxalic acid. 1 min boil is enough for spinach, and 3 min boil is good for chard. do you ever add yams and/or sweet potatoes to your shopping list? those are really beneficial too :)
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Re: Welcome to ThisIsMS

Postby Tippy » Fri Jan 03, 2014 9:25 pm

Hi

I have not heard about magnesium glycinate, will have to check it out, I'm almost out anyway. I know it is working because will wake with Charlie horses on occasion that are just horrible, if my level is too low, and used to have some spasticity but not much anymore.

I never knew that D3 and magnesium affected each other, will have to be more careful. Regarding zinc, I don't think I have had any testing done. Hmm I don't think I mentioned a virus, were you referring to the Tcelna study?

Wow never heard that about mushrooms. Very interesting.

I eat bright lights swiss chard both raw and boiled, similar to spinach. I do add sweet potatoes on occasion, and have been trying to add more recently. My hubby is not a fan, will have to win him over. :)

Thanks for all the info!!
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Re: Welcome to ThisIsMS

Postby jimmylegs » Sat Jan 04, 2014 6:21 am

hi there, no problem!

weird re the virus thing - I must have mixed up topics. for you the zinc info could be applicable given the thyroid trouble. if you get a serum zinc test, do get your own copy of results. the normal ranges can vary lab to lab but the healthy control level in published research is more consistent.

re the sweet potatoes, for the hubby perhaps they could be more palatable mashed with potato? also 50-50 sweet/regular scalloped potatoes are really nice!
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Re: Welcome to ThisIsMS

Postby Tippy » Wed Jan 08, 2014 7:11 pm

Hi Jimmylegs,

Sorry I haven't responded, it's been a bit crazy here, took vacation time over the holidays, and it was back to work on Monday. Will ask my doctor for a zinc test, at my next appointment. Great idea about the sweet potatoes, will let you know how the experiment goes. Stay warm, this weather is unbelievable.
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Re: Welcome to ThisIsMS

Postby jimmylegs » Thu Jan 09, 2014 3:46 am

hi, no worries! just make sure they do *serum* zinc.
my car has been the casualty of the cold so far :S I am hoping to get it towed in a few hours. not the battery so I don't know what the heck!
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Re: Welcome to ThisIsMS

Postby shellyb21 » Fri Jan 17, 2014 10:56 pm

It took about seven years to say hey this really is ms but my first mri had lesions my biggest complaint is cognitive impairment I cant spell or punctuation any more its a good thing for spell check but even it cant help some days but on tecfidera now do love it lots I no longer need my cane chucked in closet some day I may need it but for now I am doing amazing not been parking in handicapped walking so much farther even stairs are not my enemy lol hopefully you find something that helps you to the best you can be helped do still get tired but not as often :)
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Re: Welcome to ThisIsMS

Postby nurse2010 » Fri Jan 31, 2014 5:36 pm

Hello I just needed a place for some support. I was diagnosed with MS in august 2013 with le hermittes and some carpal like symptoms that did not reside. I am nervous about what this means for my future. I am a Rn and i have one beautiful daughter who is 7 years old. I have had in the past bowel and bladder issues as well as fatigue which i chalked up to having a baby and working two jobs while in a nursing bridge program. I am worried def about the future and in the past had accepted this diagnosis however recently I have begun to dwell on this again and am feeling hopeless already comtemplating chemo and stem cell treatment and looking into CCSVI. I want to work and get married and have more children and I dont know how this will affect my future. I no i should be living for the day today and have been taking care of myself eating better supplements and DMD.

I have never had a severe relapse as of yet and wasnt hospitalized at diagnosis. Just need some support thanks for listening.
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Re: Welcome to ThisIsMS

Postby jimmylegs » Fri Jan 31, 2014 6:12 pm

hi and welcome nurse, there's a big, understanding, supportive community here :)
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