SPASM AND STIFFNESS AS SPASTICITY

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

SPASM AND STIFFNESS AS SPASTICITY

Postby THEGREEKFROMTHED » Tue Nov 01, 2011 10:34 am

anyone who has undergone the ccsvi reaming, please tell me if you have improved in the area of my nemesis, spasms, stiffness, and horrendous spasticity.
thanks
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Re: SPASM AND STIFFNESS AS SPASTICITY

Postby mavis » Tue Nov 01, 2011 1:19 pm

I did. In fact, it was the most noticeable and relief-producing outcome of the CCSVI procedure. Unfortunately, I lost ALL of it, then some.
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Re: SPASM AND STIFFNESS AS SPASTICITY

Postby dlynn » Tue Nov 01, 2011 1:58 pm

I've had three procedures, and like mavis, I had noticeable improvement (after the first one). All three symptoms have returned,however,
I still have more stamina, less fatigue (thank God). My fatigue used to be overwhelming.
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Re: SPASM AND STIFFNESS AS SPASTICITY

Postby THEGREEKFROMTHED » Tue Nov 01, 2011 2:23 pm

mavis wrote:I did. In fact, it was the most noticeable and relief-producing outcome of the CCSVI procedure. Unfortunately, I lost ALL of it, then some.



IM SORRY. thanks for your honesty. I have spent today in bed in a straight out extended position, doubled the baclofen and zanaflex but to no avail. It sickens me that you had relief and then it was gone...obviously we are all desperate, but this phenomenon(ccsvi liberation) is still missing something.
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Re: SPASM AND STIFFNESS AS SPASTICITY

Postby jimmylegs » Tue Nov 01, 2011 2:55 pm

anyone here have results from a serum magnesium test? if so i wouldn't mind hearing the numbers to see if they are in the optimal part of the normal range - not just for spasticity but also, wrt fatigue: magnesium is a huge part of your body's ability to move/use ATP, your body's cellular 'energy currency'.

Magnesium Metabolism
A Review With Special Reference to the Relationship Between Intracellular Content and Serum Levels
http://archinte.ama-assn.org/cgi/conten ... 48/11/2415
"All enzymatic reactions that involve adenosine triphosphate (ATP) have an absolute requirement for Mg++."
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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Re: SPASM AND STIFFNESS AS SPASTICITY

Postby dania » Tue Nov 01, 2011 3:40 pm

Got relief from spasms with 2 angios and since I restenosed and all 3 veins are now 100% blocked they are worse then ever. Getting worse by the day. Really ,really bad. And so far no medication has helped.
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Re: SPASM AND STIFFNESS AS SPASTICITY

Postby KateCW » Tue Nov 01, 2011 4:01 pm

Anybody have a Baclofen pump? I meet with my physiatrist next week to discuss getting one as I have dreadful spasticity.
Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy
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Re: SPASM AND STIFFNESS AS SPASTICITY

Postby dania » Tue Nov 01, 2011 5:03 pm

I am going to try Sativex.
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Re: SPASM AND STIFFNESS AS SPASTICITY

Postby mavis » Tue Nov 01, 2011 5:29 pm

THEGREEKFROMTHED wrote:
IM SORRY. thanks for your honesty. I have spent today in bed in a straight out extended position, doubled the baclofen and zanaflex but to no avail. It sickens me that you had relief and then it was gone...obviously we are all desperate, but this phenomenon(ccsvi liberation) is still missing something.


Thanks Greek. Believe me, it sickens me too. I guess I should be thankful that it took a while (6 months +) to start losing the improvements.
I wholeheartedly agree, the CCSVI procedure is far from perfect.
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Re: SPASM AND STIFFNESS AS SPASTICITY

Postby THEGREEKFROMTHED » Wed Nov 02, 2011 5:13 am

dania wrote:Got relief from spasms with 2 angios and since I restenosed and all 3 veins are now 100% blocked they are worse then ever. Getting worse by the day. Really ,really bad. And so far no medication has helped.



ugggggggggggggggg! yuck!!!!torture......i wish teh fda would get off its ass and get sativex here. ive heard good things. I have used the medical but it makes me just too loopy. I cannot even sit up against a chair or lay on my back without every muscle locking up. its unreal...
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Re: SPASM AND STIFFNESS AS SPASTICITY

Postby IHateMS » Wed Nov 02, 2011 8:19 am

KateCW wrote:Anybody have a Baclofen pump? I meet with my physiatrist next week to discuss getting one as I have dreadful spasticity.


i do.
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Re: SPASM AND STIFFNESS AS SPASTICITY

Postby jimmylegs » Wed Nov 02, 2011 10:35 am

all right for all readers, based on some PM-ing that has been going on related to this topic:

if you high dose vitamin D3 for a long time without balancing it with other minerals, it will drain your magnesium and leave you with spasticity (among other things).

you should not need to high dose vitamin d3. if your zinc status is optimized, you will absorb d3 much more efficiently and will see results with far lower doses. in addition to the science that's out there, i've got my personal lab results to back up what i say, and NHE also was able to get good d3 numbers from combining minerals as well.

never take all your daily magnesium at the same time as vit D3. always take some mag with d3 and some away.

bloodwork is really important - if you optimize zinc you need to check your d3 levels to make sure you don't go to high. it happened to me: once my zinc level was better, i had to cut down on my d3 intake to get down out of the toxicity/hypercalcemia range.

what i was going for when i fixed my zinc level, was normalized uric acid levels (it worked). the d3 effect was a surprise.
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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Re: SPASM AND STIFFNESS AS SPASTICITY

Postby THEGREEKFROMTHED » Wed Nov 02, 2011 4:13 pm

jimmylegs wrote:all right for all readers, based on some PM-ing that has been going on related to this topic:

if you high dose vitamin D3 for a long time without balancing it with other minerals, it will drain your magnesium and leave you with spasticity (among other things).

you should not need to high dose vitamin d3. if your zinc status is optimized, you will absorb d3 much more efficiently and will see results with far lower doses. in addition to the science that's out there, i've got my personal lab results to back up what i say, and NHE also was able to get good d3 numbers from combining minerals as well.

never take all your daily magnesium at the same time as vit D3. always take some mag with d3 and some away.

bloodwork is really important - if you optimize zinc you need to check your d3 levels to make sure you don't go to high. it happened to me: once my zinc level was better, i had to cut down on my d3 intake to get down out of the toxicity/hypercalcemia range.

what i was going for when i fixed my zinc level, was normalized uric acid levels (it worked). the d3 effect was a surprise.

Duh that would be me. I take 5000iu twice a day along with a mult v and fish oil. If i discontinue d3 and supplement mag and spasm cool down jimmy i promise to send you the money ive been sending my holistic doc!!
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Re: SPASM AND STIFFNESS AS SPASTICITY

Postby dania » Wed Nov 02, 2011 4:19 pm

Not in my case.
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Re: SPASM AND STIFFNESS AS SPASTICITY

Postby jimmylegs » Wed Nov 02, 2011 8:36 pm

what is your case dania, and how long is a long time by your lights?
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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