This Is MS Multiple Sclerosis Community: Knowledge & Support

Hey friends,

I have been diagnosed with MS since Oct2009. I have been on Copaxone prescription ever since and have been able to cope with my complications decently. But today was perhaps the worst day in my life.
I was well rested yesterday, but could not manage a 500 meter walk to the bus stop. I collapsed on the pavement thrice. My knees just buckled and I could not stand any longer. It was such an ordeal to walk even the 500 meters and it took me literally half an hour to go the distance.
after a good rest, later in the day, i drove my car for 3 hours. I felt no fatigue at this time. But when i reached the destination and tried to hold the door of a building open to the person behind me, I just collapsed again. I had to sit down on the floor and wait for my legs to regain their strength.
I am now really worried. I do not want to feel this way ever again. I felt very helpless and I intend to do something about it. Has anyone else had this problem before? if so, can you please help me.

I started out able to walk fine............Now not so much...cane...etc..Avonex made me feel worse...Campath 4 months in noooo results...CCSVI look into it....

LEETZ

I know this may sound "to simple" of a solution, but, I started asprin therapy about three months ago. I figured, it couldn't hurt. I started out taking 325mg a day now I take 975mg a day. (Dont want to jinx myself here) About two weeks into the asprin regiment, I realized my energy level was almost back to normal. It might be something for you to look into.

Hi there, I took aspirin for a while, and I thought it was working well for my energy levels. But, I developed some kind of stomach ulcer from it after a month or so, so best to watch how much you take and how often.

Cheers!

Smitha
that sounds like a very scarey and frustrating day for you. Tbh I don't have many words of wisdom - I've been diagnosed over 11 years now - in time you get to know your limits, or at least to see them approaching before you reach complete burnout.

I can remember days in the past where similar things happened me but they were in the first 4 years after diagnosis and I hadn't learnt to adjust and say no, to myself and others.

Over time you'll get to know early warning signs and being selfish to a degree can help - telling friends when you're having a bad week, taking naps if you need, those kind of things. HTH

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Concussus Resurgo
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RR-MS dx 1998 and Coeliac dx 2003
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Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.

B12, B6, B3, B1

Heck, all of the vitamins from B family.

I have sublingual B12 in every purse/drawer/car compartment of mine. Works the fastest.

On the long run - anti-inflammatories such as Fish Oil, green tea, garlic, ginger, several times a day

Also - vit D

below are some links to various nutrient strategies for ms. some are older, some are newer.

for instance in the older klenner stuff, you will see heavy B vitamin influence in the protocol (not to mention E). in newer stuff, vitamin D is key.

in spite of the fears surrounding dysregulated iron in ms brains, low serum iron can also be responsible for fatigue. have you had an iron test? are you male or female, pre or post menopause? vegetarian or close to it? any reasons to suspect that iron could be involved?

that's about that, except that i'm going to delve deeper into the iron recommendation, due to the ongoing discussion of iron, CCSVI, and chelation. so, here goes:

if your iron is in fact low, you may wish to be careful how you supplement it, due to the findings of iron deposits in ms brains. it is thought this could be due to the reflux conditions you may already have read about in the rather recent discussions surrounding CCSVI.

personally (i think hardly anyone here at TIMS is really hearing this opinion), i think you need the iron for its own sake regardless of deposition in the brain in MS. i think people are getting mixed up between iron overload, and iron dysregulation. that's not to say that there aren't ppl here with chronic high iron... but there are plenty here at the other end of the scale too.

and this is where i think zinc might become a player... zinc is important for your body's handling of iron and zinc is known to be lower in ms patients compared to healthy controls.

if you go the dietary route to boost iron (if needed/desired) make sure you boost the intake of easily absorbed 'heme' iron-rich foods - not so much the non-heme, less absorbable iron-rich foods. here's a quick link to some iron info (NB on the importance of vitamin C for good iron absorption!)
Good Food Sources of Iron

at the same time, you can't just start taking iron and zinc together - you'd have to take them at different times of day because they interfere with one another. might be good to take them at different times of the month, even, say 3 weeks taking a zinc every day, 1 week on iron. but don't take my word on that idea - personally i take zinc every day and try to do one week of iron per month. i make sure i take the zinc and iron at different times of day.

iron supplements back you up, so plenty of fruits and vegetables are in order - i also like to add a magnesium citrate, it's great for your muscles and helps keep things moving inside.

hope that helps,
JL

..and here are those links....

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

@Smitha,
Aside from the helpful supplements mentioned above (and I could not function without mega vits and minerals), what are you eating?

Milk,sugar (Candy, cake,etc), gluten, fruit, will give me episodes exactly like you are describing--total inabiliy to maneuver.

Might be wise to get tested for allergies, and to avoid all sugar and processed foods.

good call shye, i have a blind spot about that stuff - rarely eat junk or processed food

i have been cooking up a storm today and yesterday..
- baked trout with lemon
- roasted onions, garlic, sweet potato, rutabaga, apples, and cranberries
- chicken soup with onions, home-soaked and cooked white beans, and spinach
- vegetarian chili with onions, celery, garlic, peppers, more of those white beans, and a sprinkling of corn,
- chicken curry with onion, garlic, ginger, tomato, and yogurt,

coming soon: pork stew, with onion, turnip, cabbage, carrots, apples and mushrooms.. and finally a nice pesto tomato sauce (no 'natural flavours' or otherwise disguised msg in pastene brand pesto) to go with a whole grain pasta at some point..

a far cry from 'best bet', but still, i would say my milk and gluten intake is probably low compared to mainstream... although my chocolate intake has definitely been up over the last week or two

curious to hear about your diet recently smitha.. it HAS been a rather sugary time of year

wow Jimmylegs, if I ate 3/4 of the stuff you eat, I'd be a wreck. I am so allergic; corn, fruit, gluten, milk, legumes, etc etc...
It took me YEARS to get it all somewhat together--first, was told all in head--this continued for years--then I just took milk out of diet--helped just a bt, so then milk and wheat--still only helped a bit. So I then started to think it maybe was all in my head, so added them back to diet, and got worse. Nothing was really helping. And of course, getting the MS diagnosis took years also, kept getting," it is just in your head" reactions from doctors.
Finally, started doing some research (pre-internet!) but was often too brain fogged to absorb the info!!!
And so it went for years--so I didn't stop the inflammation til late in the game, til I got tested for allergies, and started super-elimination diet, with super mega supplements.

So, moral is, trust yourself, get allergy tests, and take supplements. Takes effort, but you WILL feel better at some point.

ugh no fun shye, do you have serum levels for 25(OH)D3 and zinc?

Yes, tested several weeks ago for D 44ng/mL or about 110 nmol/L, so will continue with high dose to bring it just a bit higher

Zinc done # of months ago--was high, but can't remember the figure
(I take high zn supplement)

I keep up with testing, because I do take lots of supplements, and don't want to screw things up even worse!

Problem now, for me and lots of others who don't even yet realize it, Medicare just stopped paying for Vitamin D testing.

Also, here in NYS, no insurer can pay for Zinc testing.

Cuts in what they insure happen every day--we only find out each time we go for various tests.

ugh re vitamin d3. there's research out there suggesting it's pretty much negligent for docs not to do yearly d3 screening, i guess medicare isn't on the same hook boo at least you're up over 100, right ballpark.. my last level was 123nmol/L, i take 25,000IU once per week with a few additional tidbits in my daily stuff.

if you could possibly get a firm number for your zinc level, i'd be interested to hear what it is and what amounts you supplement at daily.. ever had a uric acid test done?

smitha, any thoughts on the nutrition aspect? iron/fatigue, etc?

Jimmylegs............can you pass on some of the delicious recipes???feel free to pm me anytime.............you got me hungry for some good healthy food now!!!!lmao

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GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...

JL, I'd love to have a recipe for these two in particular. I could do without the mushrooms but I'm crazy about turnips, especially raw.
Kara