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Postby krsm_131 » Sat Aug 16, 2008 11:11 am

Hey guys and gals! I'm Krissy, I'm 20. I would love to say I have epilepsy and MS and it doesn't have me, but I can't. They're currently kickin' my butt.

I was diagnosed about two years ago with epilepsy, and about 4 months ago with MS. My neuro put me on Rebif, I was on that for just about three months, then my LFTs were over double the amout they should be, so I had to go off that. Now I'm just waiting for my liver to get back to normal, and it's taking awhile. I don't drink, or smoke, or do anything like that.

My epilepsy is completely out of control. In the morning, I take 750mg of depakote ER, 100mg of zoloft, 200mg of topamax, 200 of zonegran, and at night I take 1000 of depakote ER, 200 of topamax, 200 of zonegran, 25 mcg of levothyroxine. I also take 1 mg of ativan every 8 hours for seizures, because I have 3-5 complex partials a day, and a tonic clonic once in awhile.

My last spinal and MRI was in May of 08. My last VEEG was March of 08. Before that was Dec of 07.

Depending on how I feel, I'm supposed to start solu medrol treatments at the hospital for 5 days next week. I've never had them done before. So, that should be an experience. My neuro just doesn't know what to do. And I don't either.
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Postby Loobie » Sun Aug 17, 2008 5:40 am

Hi Krissy,

Sounds like you're having no fun at all. You have a lot to deal with everyday just with keeping up with all your meds. I want you to know you're welcome here to talk about anything and there are some great people on here who love to research and share what they've learned. I wish you well with all your ep. is doing to you right now. That sounds rough. TAke care,

Lew
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Postby krsm_131 » Sun Aug 17, 2008 3:17 pm

Thank you Lew.

I'm here just to find out more information, my neuro said I can't go on avonex or copaxone because it'll do the same thing to my liver, so, I'm looking for something different I can take. I'm so frustrated. I'm hoping my frustrations will result in something good!

Krissy
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Postby cheerleader » Sun Aug 17, 2008 4:45 pm

Hey Krissy...
One thing that can be a help for epilepsy and MS is eliminating trans fats from your diet, and replacing them with good omega 3 and 6 oils. You'll be feeding your brain. That means getting rid of processed stuff (margerine, fried foods) and adding some healthy oils.

Here's some more info:

"Essential Building Materials–To build brain cells you need fatty acids. Two kinds of fatty acids are considered "essential," which means you must get these essential fatty acids (EFAs) from the food you eat. Your body cannot manufacture them.

The first essential fatty acid you need is Alpha-linolenic acid (ALA). ALA is the foundation of the "omega-3" family of fatty acids. Food sources of omega-3 ALA include flax seeds, chia seeds, walnuts, sea vegetables, and green leafy vegetables.

The second essential fatty acid you need is Linoleic acid (LA). LA is the foundation of the "omega-6" family of fatty acids. Food sources of omega-6 LA include expeller cold-pressed sunflower, safflower, corn, and sesame oils."

http://www.fi.edu/learn/brain/fats.html

Good luck as you put all the pieces together...
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby krsm_131 » Sun Aug 17, 2008 4:48 pm

Would it help that I'm a vegetarian?
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Postby cheerleader » Sun Aug 17, 2008 6:20 pm

Jimmylegs might have something to say on the topic of MS and vegetarianism or non-veggieism, my husband and I are carnivores....
It's a good idea to make sure you're taking in good fats, and since you're not eating meat, you won't have to worry about bad saturated fats. But you're missing out on omega 3 oil from fish. Maybe some supplements will help you-
Check out the boards under diet and nutrition to read up and get some ideas.
AC
PS....my husband got his elevated liver enzymes back to normal using a milk thistle supplement. You've got alot going on, Krissy....thoughts are with you. I hope nutrition and diet might be a help for you-
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby krsm_131 » Mon Aug 18, 2008 2:53 am

Thank you cheerleader! I'll have to check out the other board.
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Postby krsm_131 » Tue Aug 19, 2008 1:04 pm

I got a call from my neuro's nurse today... and I'm happy to tell you all that... my LFTs are NORMAL!! :D I guess it was just the Rebif that was doing it to me.
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Postby cheerleader » Tue Aug 19, 2008 2:48 pm

Glad your liver's OK, Krissy! Just fyi, copaxone is not dangerous for the liver. It works differently from the interferons, and won't mess with your liver function. My hubby's done well on it- his liver enzymes were high when he was diagnosed with MS...and we still don't know why, but he wasn't even on copax then. His enzymes have stayed healthy.
Hope the rest of you can get some healing, too.
best,
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby jimmylegs » Thu Aug 28, 2008 6:32 am

hi krissy, cheer knows me so well. vegetarian=bad. sorry. i was a vegan for 15 years and in the end, biochemistry has kicked my ass. all my trouble really started when i cut out processed foods, like soymilk, veggie dogs, and stuff like that. so i lost my last traces of fortification. when i started researching how to give my body what it needed to fight ms, i changed my mind about my dietary restrictions. it literally got to the me or them point. at first i thought all i had to worry about was b12. then i realized that vitamin d, the b-complex in full, iron and zinc were also issues. my serum uric acid was in the normal range, but bang on the ms average. my zinc wasn't even in the normal range at all, it was lower than the lowest zinc status even of an ms patient, from the research i've seen.
i am so sorry to hear you're having a bad time with epilepsy on top of this. my friend has epilepsy and we hadn't seen each other since high school, and got together this one night last year and had some beers. next day he seized in the shower and ended up with a broken jaw. he had another one recently and is in pretty rough shape right now. he has trouble keeping jobs because of it all, it's really not fair. he can't drive because it's too risky not to mention the cost of his insurance is prohibitive. he is going back to school soon, actually for nutrition at a college near where he lives. i hope he digs up some great answers!
if you start reading up on things using google scholar you might find some worthwhile reading. you can just search epilepsy nutrition, or epilepsy deficiency, same thing with ms. here's a start
The Ketogenic Diet for the Treatment of Epilepsy: A Challenge for Nutritional Neuroscientists
http://www.informaworld.com/smpp/conten ... 609~db=all
for my ms, a short term blast of a modified klenner protocol helped lots. i mention it because the epilepsy diet abstract mentioned "adequate protein". my version of the klenner involved tons of b vitamins, pretty much a b-100 with every meal and at bedtime, vitamin E with every meal, lecithin with every meal, high protein diet (2 eggs at breakfast were recommended), that kind of thing. i ignored the recommendations for magnesium and zinc but in hindsight that was just being stupid.
anyway hope you get some solutions SOON!
welcome to the forums :)
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