it's official...

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it's official...

Postby cheerleader » Wed Feb 04, 2009 7:12 pm

Jeff's having an exacerbation. Off to the neuro tomorrow to hopefully start a course of steroids. He's been hobbling around on a numb left foot this week...hoping it would go away on it's own. It hasn't.

Two years with no flare was a good run...so yeah, I'm back :oops:

The two similarities from his first flare are February and too much work stress and sleep disturbance. Anyone else notice seasonal connections to their flare ups?
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby jimmylegs » Wed Feb 04, 2009 7:44 pm

sad news cheer :( what's the daily regimen these days?
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Postby cheerleader » Wed Feb 04, 2009 7:59 pm

Hey Jimmy....I'm ba-a-a-ck.....
Still the same supplement/food routine as in the endothelial paper...
with the huge exception that since he was "feeling so good" he took on double the work projects, and hasn't been sleeping as well. Lots of deadlines, work stress, dealing with annoying clients. And our son's been having trouble in school. :(
I think it all added up...
The good news is, it's the same area as his first flare, nothing "new" and we know steroids work for him.
I'll keep ya posted,
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby notasperfectasyou » Wed Feb 04, 2009 8:02 pm

Good Luck Cheer, I know this is a tough time. Let us know how it goes. Ken
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Postby jimmylegs » Wed Feb 04, 2009 8:08 pm

hi cheer, i guess that's the thing... if the amount of stress changes the routine probably has to ramp up to match. we all know you take good care - keep up the good work!
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Postby jimmylegs » Wed Feb 04, 2009 8:29 pm

oooooooooh he's going to love me for this, *but* i'm going to say it anyway!
consider boosting the b-complex during stressy times. maybe a b50 with lunch and dinner for a week.
does he get a flush reaction from the 75 mg niacin?

....and.... sunflower seeds and oysters :)

Daily Nutritional Supplements:
DHEA (to balance hormonal levels) 25mg.
CO-Q10 200 mg.
B-12 sublingual (lozenge under the tongue) 5 mg.
Omega 3 fish oil 1000 mg.
Alpha Lipoic Acid 300 mg.
Inosine - (raises uric acid levels, which are low in MS patients....inosine has been shown to scavenge peroxynitrite and help endothelium health in MS patients....contraindicated for heart disease 2000 mg.
Glisodin (antioxidant catalyst) 500mg.
Vitamin D 4000 IU
Glutathione (antioxidant) 1000 mg
Cod Liver Oil (DHA/EPA) 1000 mg. .
Microalgae Oil 200mg.
Grape Seed Extract 200mg.
EGCG (green tea extract) 600mg
Quercetin 400mg
Serrapeptase-enzyme 500mg
Nannokinase-enzyme 2000FU
A daily Probiotic 14 million good bacteria!
Calcium/Magnesium/ Zinc (essential minerals) 1000/500/50 mg.

2 additional daily Multi-vitamins include-
Vit. B-12 75 mcg.
Folate 400 mcg.
Vit. B-6 75 mg.
Niacin 75 mg.
Vit. B-2 75 mg.
Thiamine 75 mg.
Vitamin E 150 IU
Vit. D-3 400 IU
Vit. C 250 mg.
Vit. A 15000 IU
Iron 28 mg.
Phosphorus 22 mg.
Iodine 550 mcg.
Selenium 60 mcg.
Copper .30 mg.
Manganese 11 mg.
Chromium 65 mcg.
Molybdenum 50 mcg
Potassium 70 mg.
Pantothenic Acid 75 mg.
Biotin 75 mcg.

Herbs
Milk Thistle (liver tonic) 350 mg. everyday for one week out of the month
Salvia 60mg.
Ginko 60mg
Curcumin 500mg
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Postby cheerleader » Wed Feb 04, 2009 9:18 pm

Thanks Jimmy...all good ideas. Will get on that right away!
:wink:
cheer
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http://ccsviinms.blogspot.com
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Postby DIM » Thu Feb 05, 2009 12:36 am

That's very bad Cheer, wife had a mini "exacerbation" exactly for the same with your husband reason before a month.
Stress related it started the first day of her period with very mild symptoms in old affected areas again the same month as her old exacerbation.
According to my doctor a new relapse should affect new areas of the body so don't worry and think twice for steroids, usualy they do nothing for the lessions nor affect positive MS procces!
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Postby Loobie » Thu Feb 05, 2009 4:32 am

Cheer,

I definitely am affected in a big way by the seasons. However, I do notice the bitter cold so much more now that I don't know if it affects my MS so much as it affects what MS has done to me. Does that make sense? Like now that I have such limited range of motion, there are times when I'm 'bone cold' where I don't even want to move, but up to the point when I started Tysabri, I was feeling like I was having a significant flare, and one time an actual relapse, right around Christmas time. So I can say that for sure the winter is a time of much more heightened disease activity than the warmer seasons. Basically when I was on no meds (read: the Tovaxin debacle), being on meds this winter I believe has helped.

Sorry to hear about Jeff dude. I know you'll get him through it. Keep his chin up, that's about the most important thing sometimes. I'm not kidding. Attitude during a flare can, I believe, even make it so you question whether you are having it or not if your attitude is good. When it's bad, you notice everything. I know you won't, but just don't forget about his spirit through all of this. If he's like me, he hates his friggin' MS and when the physical starts, it really does affect my outlook.
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Postby robbie » Thu Feb 05, 2009 8:09 am

same all year round for me cheer.
Had ms for over 19 years now.
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Postby chrishasms » Thu Feb 05, 2009 8:39 am

Sleep issues were the first way I knew there was something wrong again after Revimmune. I stopped sleeping well. Racing thoughts that will not stop or let me sleep.
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Postby gainsbourg » Thu Feb 05, 2009 9:34 am

Sorry to hear about this Cheer, but I feel Jeff is in good hands and this is just a blip.:)

MS is a disease of the nerves, and to me it is logical that we need to protect our nerves first and foremost, i.e avoid stress!

I use the same logic with almost any disease. If you pull a muscle - take it easy on that muscle. If you have an eye disease - avoid straining your eyes. If the nerves of the CNS are sick or inflammed - take it easy with your mind.

After all, biologically the mind is the nerves of the CNS!

I once had an eye disease. My friends had good advice: 'avoid computer screens for a while, avoid driving at night, don't read in dim light' At the hospital they just gave me steroid drops and said nothing.

I threw away the drops and listened to my friends and my eyes got better. Later I discovered that the drops I'd been given for this minor complaint increased the risk of cataracts and glaucoma.


gains
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Postby cheerleader » Thu Feb 05, 2009 9:59 am

Thanks so much for all the advice and support, guys. This is why I came here in the first place... it's really appreciated. Lew, I'm booking a podiatrist to get some orthotics made...that was a good call. I'm glad you're posting again, Rob...missed you!

Well- Jeff had a good night of sleep last night, and I'll be damned...his foot feels better! He's relieved, and I'm glad he won't ask for steroids. We'll check in w/ his neuro today anyway, since it's been a year since his last checkup. He's admitted to trying to do too much, so we're looking at ways to keep life a bit simpler.

thanks again,
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby DIM » Thu Feb 05, 2009 10:23 am

Attitude during a flare can, I believe, even make it so you question whether you are having it or not if your attitude is good. When it's bad, you notice everything. I know you won't, but just don't forget about his spirit through all of this.

I agree 100%, wife has very often stress which introduces exacerbations!
If you forgot you have MS (but follow BBD, supplements etc) it will forgot you also!
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Postby mrhodes40 » Thu Feb 05, 2009 2:29 pm

I'm glad he is feeling better today, a visit to the neuro is good idea to catch up. I know first hand the pain of having a working theory that seems to be the real thing and then having an exacerbation unexpectedly right when you were feeling safe. Darn! that hurts! I'm glad it's better.

As for seasonal things, for me big time--Autumn. Look out if you are me and it is fall time. I have to always pay attention then, so I am down for extra sleep rest and low key.(I've had MS 18 years so I do have a known rhythem)

Now here's the wierd thing : I subathe all the time and fall is when the d levels are the highest. I think I read once upon a time that spring is the highest risk for exacerbations due to lower d levels...don't quote me, but I thought it seemed reasonable when I read it so it went right into my "of course" mental box. Odd that that is when I get problems.

I have a friend whose fall experience is one of a big "bounce back" because her allergens of the summer and the heat are over and those things seem to stress her body. Her main idea is that MS is a disease of a "tipping point" wherein there is just too much going on and the body gets behind with not enough antioxidants etc and critical failure happens. She uses lots of antioxidants based on her idea as you might expect.

I hope your husband does very well and it turns out to be just one of those "blips"
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