starting to panic

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

starting to panic

Postby javabean » Mon Nov 01, 2010 6:04 pm

I hate to bring this up, but I feel like I'm losing it. I know I'm lucky to be getting this procdedure (Decembner 13)but I can't help but feel like "what if they don't find anything?" and "what if it doesn't help?" I've has MS for eleven years and just wonder how much I will/can regain in terms of improvements. I still walk withoug assistance but know I will need a wheelchair to get through the airport to go to Albany. I can't walk far due to spasticity, I think. I know no one can give me any answers, but maybe on the spasticity front...do peoploe think it will help? I dion't want to seem self centered b/c I know many of us here are struggling, but I am terrified of a life the way things are now.
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Re: starting to panic

Postby Cece » Mon Nov 01, 2010 6:20 pm

I think you express feelings that many people are feeling.

I don't know about spasticity, it seems people's outcomes are as variable as all of our forms of MS in the first place. But I hope you will see relief.

My other thought too is that CCSVI is literally in its infancy. We have attracted some amazing docs to our cause. They will learn so much in the next few years. I think our focus for now needs to be on getting the best CCSVI treatment possible without doing any harm (no clotted-off stents that destroy a jugular forever) and, as much as possible, without spending one's life's savings for it. That way in a year or two or five when they know more, we'll be able to get a repeat venoplasty done right.
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Postby javabean » Mon Nov 01, 2010 6:24 pm

Thanks Cece,
Do you think the amonut of procedures the doctor has done has anything to do with outcomes? I mean, the better the procedure, the better the outcomes? Dr. Siskin will be doing the one for me.
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Postby jimmylegs » Mon Nov 01, 2010 6:28 pm

bean.. sorry to hear you're stressed out.. it's a tough situation to face for sure.

just curious.. have you ever checked out your nutrient levels to ensure that all the 'usual suspects' found in ms patients are not in fact, at the usual ms levels?

i used to have a very typical set of lab results for an ms patient. i have spent the last few years working on nailing down the definition of a 'healthy' set of lab results, based on information available in peer reviewed scientific journals. it's ongoing work to make sure my blood is 'healthy' but if relapse rate is any indicator, it's working - i haven't had a relapse since my dx attack.

if you have problems with spasticity, i wonder if your magnesium level is optimal. research suggests that a healthy level is at least 0.91 mmol/L.

there are a few main causes of magnesium loss check them out:

Diet. The average American diet fifty years ago contained almost twice as much magnesium as does our present diet.
Drink. Alcohol alters magnesium balance in several ways...
Diarrhea. By this I mean gastrointestinal problems in general,
Diuretics. This includes the use of diuretics (including... java beans... ;) )...
Drugs. Multiple medications have been shown to increase renal magnesium loss...
Disease. Foremost among these is diabetes...
Diaphoresis. Sweat contains magnesium...
source: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1500911/

magnesium is good for anxiety as well as spasticity, fyi...

i have target blood levels for other 'usual suspects' in ms; if you are interested just say :)

HTH,

jimmylegs
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
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 » Mon Nov 01, 2010 6:36 pm

jimmylegs, thanks for your kind response
No coffee for me. I'm eight and a half months pregnant -- which is part of the reason I'm so scared -- caring for an infant. (Javabean is my dog). :D
But I have tried Magnesium and for a while it really helped. Problem was that it relaxed all my mucsles and I found myself in an uncomfortable bathroom situation. That is why I have cut back. I still could have my blood checked to see if maybe there is an optimul amount I should be taking.
Thanks
p.s. if you have the levels for the blood tests, I would be happy to see them.
one last thing...medical mariuana. in no way do i plan to use anything while I'm pregnant, nor do I want to be high while caring for my child. But if I could take it at night, maybe it would help with the leg pain and spasticity the next day. I have heard good things. I also have no idea how to get medical marijuana ans how all that works. another thing to research
Last edited by javabean on Mon Nov 01, 2010 6:51 pm, edited 1 time in total.
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Postby Cece » Mon Nov 01, 2010 6:45 pm

javabean wrote:Thanks Cece,
Do you think the amonut of procedures the doctor has done has anything to do with outcomes? I mean, the better the procedure, the better the outcomes? Dr. Siskin will be doing the one for me.

It's been suggested that a doc needs fifty procedures before being considered an expert. Dr. Siskin definitely has that. He was a student of Dr. Sclafani's, he's worked closely with the other East Coast doctors. These are all pluses.

But there are a number of things affecting outcomes. We need them to find all the stenoses and they haven't figured out how to do that yet. We need them to balloon to the right size for the right duration and the right repetitions and they don't know what right is yet. We need them to prescribe the right anticoagulant that will protect us from clotting, they don't know what's right yet. (Dr. Siskin uses Plavix, an antiplatelet, but Dr.Zamboni has recommended true anticoagulants.) What we do know is that a tight schedule of follow-up dopplers is crucial, plus a contingency plan for what will be done if restenosis is found.

I forgot too, you posted earlier about your due date and your procedure date a month later. An eventful year!
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Postby David1949 » Mon Nov 01, 2010 6:57 pm

I think it's quite normal for you to feel stressed in this situation. You're worried about getting to the hospital, and about going through the procedure and of course you are worried that it might not bring the results you want. But you are also aware of the consequences of not getting the procedure. Without the procedure all of us will grow sicker and sicker, and our physical abilities will continue to deteriorate. For my two cents worth I think you are making the best possible decision in a bad situation.

I wish you the very best.
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Postby javabean » Mon Nov 01, 2010 7:09 pm

You're right David,
This looks like the best thing going and if it stops progression that would be great. I just want my old life back and it seems like that has happened for people. I guess it's a balancing act of trying not to compare myself to those with remarkable results and take my situation as my own.
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Postby jimmylegs » Mon Nov 01, 2010 7:34 pm

javabean the dog - cute!

okay so as far as the mag you used to take goes, what form were you using and what dose per day?

there is a form of magnesium, magnesium glycinate, which is wonderfully absorbable compared to things like magnesium oxide and even magnesium citrate.

trust me i know the laxative effects of insoluble forms of magnesium ALL TOO WELL :S yuk!

but, there are forms out there now that will give you no GI grief, just spasticity relief :)

also FYI some of the best food sources of magnesium are dark leafy greens like chard and spinach (1c of either, boiled, delivers about 150mg), also fish such as halibut and chinook salmon (also 4oz of each delivers around 150 mg).

target values for various MS relevant nutrients:

vitamin D - 25(OH)D3 should be at least 100 nmol/L, better at 125-150.
vit b12 - aim for at least 500 pmol/L
zinc - aim for high teens, ~18 umol/L (17-19 is OK too, no higher than 30)
uric acid - aim for 290 - 300 umol/L
magnesium - at least 0.91 mmol/L

there are other things it's beneficial to supplement, like vit E8 complex and fish oil, but i don't have good target numbers for those.. YET :)

HTH!
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
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 jimmylegs » Mon Nov 01, 2010 9:12 pm

ps i will take it on myself to guarantee that if magnesium helped you before, there is no way you should need to consider medical mary jane!!

MHO: just get the right mag in you. try increasing dietary sources plus the best supplementary forms.

four foods that provide around 150mg mag: 1c boiled spinach, 1c boiled swiss chard, 4oz baked halibut, 4oz baked chinook salmon.

target daily intake: 900mg. if you need the supplements, so be it!

good luck, pls let me know if you have any other questions :D

jimmy
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
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 » Tue Nov 02, 2010 6:28 am

Thanks for the support. I think I just need to vent once in a while.
jimmylegs, thanks for the tips about the magnesium. I'll give it a try.
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Re: starting to panic

Postby L » Tue Nov 02, 2010 7:00 am

javabean wrote:I can't walk far due to spasticity, I think. I know no one can give me any answers, but maybe on the spasticity front...do peoploe think it will help?


Plenty of people in video diaries reported a reduction in spasticity so I think you should hope for the best. It's by no means guaranteed but it's definitely a possibility.

Remember that the azygous vein is thought by some to be under-treated and it could well be the most important when talking about leg spasticity. Many IRs aren't finding significant problems there but Dr Sinan, when using the balloon as a diagnostic tool, reports azygous problems in 95% of MS patients.
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Postby bluesky63 » Tue Nov 02, 2010 8:35 am

OK, no time here, sorry! A couple of quick thoughts --

* pregnancy and after bring different nutritional states and challenges as well as different energy challenges -- don't automatically think your issues are MS/CCSVI/procedure/etc.

* are you planning bloodthinners with breastfeeding? perhaps a natural alternative?

* breastfeeding was demonstrated to significantly reduce relapse rate

* most meds are fine during breastfeeding if it turns out you need them -- look for the book by Dr. Thomas Hale on breastfeeding pharmacology or the book by Dr. Jack Newman (and by the way -- the relevant question could always be -- does the nutritional benefit of breastmilk, even if the mother is temporarily taking a particular med, even medicinal marijuana, outweigh the negative nutrition of breastmilk substitutes?)

* babies love wheelchairs :-) and they certainly save energy -- don't be afraid of using them to save your strength for where you need it in your recovery. I think people don't use wheelchairs till they are desperate, and then they are amazed at how liberating it is. Go ahead and work with a great physical therapist to get a *really cool* chair -- not an ugly stereotypic orthopedic one, a lightweight sporty funky one with power assist wheels that will make you independent and happy! It will make everyone wish they had one! Then use it for distance and save your walking for around your own home with your family. (get good advice on choosing chairs from wheelchairjunkie.com; power assist from quickie x-tender)

* I was able to cut down some on baclofen but not eliminate it; I might recommend water exercises, which a baby would also really love :-)

* sleep when your baby sleeps! keep hydrated! :-)
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Postby javabean » Tue Nov 02, 2010 8:42 am

L,
You're right, many in the videos have mentioned relief from spasticity. I love watching those btw, so thanks for continuing to post them.

bluesky63, yes, this pregnancy and weight I have gained have done a number on me. No remission for me on this one. I am not even sure what meds would help me right now. Baclofen isn't doing much, maybe Neurontin? The pain in my legs that comes with walking is almost unbearable!
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Postby bluesky63 » Tue Nov 02, 2010 8:48 am

Have you tried zanaflex? I also remember stretching on a giant yoga ball made my legs feel better around that point. And soaking in epsom salts. I wish I could be more help!
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