starting to panic

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby hannakat » Tue Nov 02, 2010 8:57 am

I've been told by 2 nutritionists that magnesium should be taken with calcium. Since I started taking them together my spasms have greatly reduced.....
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Postby javabean » Tue Nov 02, 2010 1:14 pm

Is zanafelx different than Baclofen in terms of results?
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Postby jimmylegs » Tue Nov 02, 2010 2:08 pm

yw java :)

magnesium should be taken with calcium
.

true hannah. that's great that your spasticity has improved!

basically, you want to have your mineral intake balanced at an optimal level for each one. calcium and magnesium actually compete with each other for absorption, so although you do want to take both, if you take them together you have to account for that competition.

most blended products account for the antagonism by putting their products out at certain ratios 2:1 calcium to magnesium, or 2:1 magnesium to calcium, depending.

my approach is to take a certain amount of each over the course of the day. some goes in from food, some goes in from a blended mineral/vit D3 pill, and some magnesium glycinate goes in on its own.

i like to take my supplemental magnesium on its own at bedtime. i have seen it suggested that calcium should be taken in the day, and magnesium at bedtime.

here's a link to a rather interesting read on balancing calcium and magnesium, related to thyroid issues but relevant nonetheless :)
http://www.ithyroid.com/ca_and_mg.htm
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Postby javabean » Sat Nov 27, 2010 7:13 pm

I'm back...
Thre panic had returned with a vengence, I'm serious. If anyone has ever had panic attacks, I'm right here with you. I am two weeks away from liberation and feel like I am going to die. If this procedure doesn't work, I'm looking at going on disability, losing my house, moving somewhere I don't want to, etc.
Casn anyone tell me about symptom improivement regarding difficulty wallking. I can just barely make it arounmd the block. Had MS for 11 years. Do people really think the procedure could help me? I'm desperate!!!!!!!!!!!
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Postby soapdiva884 » Sat Nov 27, 2010 8:04 pm

Javabean, I am so sorry your feeling panicky. My bf was liberated by Dr. Sclafani a couple weeks ago. He is feeling more energy, less wobbly walking, clearer thinking, somewhat warmer hands and feet. As for spasticity, nothing yet. But, that does not mean it will not happen.
My bf is feeling better with each day. So, just know that you may feel the postive effects for many months to come after the procedure.
I hope you can relax and take some deep breaths. For you and that baby you are bringing into this world. You will do this and be so proud of yourself after it is all over. I wish you all the luck in the world.

Edited to add: bf dx'd 2006 RRMS.....was on Rebif for years......went to Tysabri............has stopped that since liberation.............uses cane full time...............motorchair when there is alot of walking going on.

**have you had the baby?**
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Postby L » Sun Nov 28, 2010 10:53 am

javabean wrote:Is zanafelx different than Baclofen in terms of results?

Zanaflex/Tizanadine is supposedly more effective. I think it's also more expensive.

Baclofen did nothing for me but Tizanadine does next to nothing for me..

It did gave me very interesting hallucinations when I took too much of it though. The first time it happened they were colourful, stylised, animations on a black background. Lots of reds and purples. An objects or a figure that would morph into a different object or figure. constantly evolving. The second time they were much more impressive. It was like the ceiling was illuminated a bright white (it was night time) with intricate line drawing illustrations of crowds of people and different locations covering it. The image changed, like you were turning a page, every three seconds. I was aware that I was hallucinating and I was quite surprised at my own capability to generate these images. It lasted for about twenty minutes before I fell asleep. Tizanadine makes me very drowsy you see. I was recommended to take 12mg 3x a day but I spent nearly all day sleeping. I tried taking 32mg in one dose before bed. The hallucinations came a couple of months after I started this.

I decided that encouraging this sort of thing might be a bad idea so now I just take 12mg once a night..

But, anyway, to get back to the point, I find Tizanadine pretty ineffective but not as innefective as Baclofen was.
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Postby javabean » Sun Nov 28, 2010 12:05 pm

Thanks for your responses. I don't know if I can't walk well due to spasticity. It may just be weakness. I guess what I would love to know s if and how well the procedure will work for me. I know no one on the board can answer that, but that is where the panic stems from. I can just barely carry myself around and am so tired of feeling this horrible. I would love to know if someone in my shoes had had improvements like the ones I am looking for. Just more ability and stamina when walking. BUt I suppose if someone did get better they might not be looking on this forum all that much...
I'm nuts, I know!
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Postby Cece » Sun Nov 28, 2010 3:13 pm

I saw a Youtube video of someone out walking her dog, it was what she'd hoped to be able to do from the procedure and she got it.

We can't tell you what you'll get, I can hope that it's everything and more. It doesn't sound like you're scared about the procedure or uneasy about going through with it? Just really needing it to help.

I posted before with Siskin's odds (a third "wow" improvements, a third mild gradual improvements, a third no improvements). I think it's favorable that two-thirds of the people he's treated have gotten improvements.

You're not nuts, you're beans.... (java beans)

Take care, we are all rooting for you. Do you know what anticoagulants you'll be on afterwards and what you'll do in the event of clotting or if you need a follow-up doppler ultrasound?
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Postby CureIous » Sun Nov 28, 2010 4:24 pm

javabean wrote:Thanks for your responses. I don't know if I can't walk well due to spasticity. It may just be weakness. I guess what I would love to know s if and how well the procedure will work for me. I know no one on the board can answer that, but that is where the panic stems from. I can just barely carry myself around and am so tired of feeling this horrible. I would love to know if someone in my shoes had had improvements like the ones I am looking for. Just more ability and stamina when walking. BUt I suppose if someone did get better they might not be looking on this forum all that much...
I'm nuts, I know!


It is perfectly normal to want some kind of %'s, stories, evidence or other "knowns" prior to procedure, regardless of our infinitely variable levels of disability, there's at least one, two, or more things that we all would like to see out of the other end of testing/procedures.

It is good that you seek to vocalize these things, the mind can do incredible things to a person in place of The Unknown. Going down a dark street alone at night, you can always work yourself into a panic imagining..

You do well to identify these things and communicate them, therein lies the power of The Unknown, and you remove some of that paralyzing fear by doing just that.

Perhaps a list of the most vexing questions, written by your own hand would do much to help neutralize The Unknown. This is why I iterate, that the early birds were probably the most fortunate in that respect, as less info to go on also means less stories going this way, and that way and all points in between.

Then mentally prepare for NO benefits whatsoever. As we drove up North to Stanford 16 months ago, that was called "Worst Case Scenario". It meant no stenosis, nothing to treat, and a long, long drive home empty handed.
Talk of it usually followed talk of all the Good Stuff That May Happen. 9 hours in a car leaves little in the conversation pantry.

By the time you get in there, get tested, and hopefully treated successfully, thoughts will be wholly with the process, and much less on what the results may be later on. Frankly, I was so exhausted in the whirlwind that led up to it, that the process seemed so benign and tame in comparison.

While I cannot speak to the spasticity side of MS, and can't answer any of that part of your questioning, I do know that the mind is very very powerful when left with a vaccuum of information.

Here's hoping to the best results possible for you. Come back and vent as you feel the need, the last couple week's jitters can be maddening sometimes...

Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby javabean » Sun Nov 28, 2010 5:08 pm

Thank you for your replies. I jsut feel likle my luck (getting MS) so far has been crappy and what will this new opportunity for healing bring? I can do so little physically that I am miserable. I fel like sometimes I can't make it. What if nothing improves? I will be devisated.
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Postby javabean » Sun Nov 28, 2010 5:17 pm

Cesi,
I have no idea what I will be on afterwards or follow up treatment. I haven't spoken with Dr. Siskin yet. And yes, I'm not worried about the treatment, just the results...
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Postby CureIous » Sun Nov 28, 2010 5:56 pm

I know there's a ton of youtube vids out there, just wanted to point to this one I uploaded for someone, someday hope to make a before/after for her.
Here is her before vid on her page: http://www.youtube.com/watch?v=pI4CbQX5 ... re=related

And the after (2 months) which I rotated for her (the cam was sideways) and posted on to my youtube:

http://www.youtube.com/watch?v=C9TvNZw5aWg

I think this is more in line with the slow and steady progress that some are experiencing. There's enough out there showing both extremes so thought a "middle of the road" was in order.. I believe she is now doing even better than the vid shows.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby javabean » Thu Dec 09, 2010 11:58 am

So here it is. I leave tomorrow for my treatment on December 13th. I have been told by one nurse at Albany that only 15-20% have marked improvement and by another nurse that she has not seen somone who doesn't walk get up and walk after the procedure, that is takes months. So, what am I saying? Some of my hopes feel dashed. I appreciate people's responses and I will update as to how things went. I hope to feel something so that I know maybe there will be further gains in the future.
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Postby bonzo1986 » Thu Dec 09, 2010 3:01 pm

Best wishes for you JavaBean!!!
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Postby L » Thu Dec 09, 2010 3:27 pm

Good luck to you!
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