SPASM AND STIFFNESS AS SPASTICITY

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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dania
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Re: SPASM AND STIFFNESS AS SPASTICITY

Post by dania » Sat Nov 05, 2011 8:16 am

I think the problem here is understanding that when you have progressed to a great degree of disability, muscle spasticity becomes worse and is relentless. If you are not in that category you can not understand what it is like. We, in this miserable state, have probably tried almost everything and have found little nor no relief. Before mine became this bad it did fluctuate, There were times it was less and times it was worse. No rhyme or reason. The intensity still fluctuates. But now it goes from bad to really, really bad. I wish taking magnesium would help, but for me that is not the case. Been there tried that.

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sou
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Re: SPASM AND STIFFNESS AS SPASTICITY

Post by sou » Sat Nov 05, 2011 9:34 am

I can't agree more. I believe that all "MS help" stuff works for patients that don't need it, in the first place.

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THEGREEKFROMTHED
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Re: SPASM AND STIFFNESS AS SPASTICITY

Post by THEGREEKFROMTHED » Sat Nov 05, 2011 11:52 am

You get it dania. Im dying over here. I am like you where i had fluctuations and now its constant. Its very emotionally and physically draining and im taking zanaflex baclofen and valium just to get out of bed!! And im still in pain. Its nuts. Out of the blue it ramped up. It has ruined pt. which used to help. I go into complete spasm the following day. Its like having a straight jkt on filled with razor blades. Even the neuro doesnt get it telling me see ya in two weeks take a extra baclofen which by the way is stealing my personality and claiming any strength. They say use it or lose it but with this pain of stiffness the only comfort is stayin in bed drugged up. Which is very foreign to me. I cant even sit in a chair its like being poked by a cattle prod. Thats why when jimmy offered magnesium it was at least hope. Which by the way is tough to find these days
Last edited by THEGREEKFROMTHED on Sat Nov 05, 2011 12:13 pm, edited 1 time in total.

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jimmylegs
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Re: SPASM AND STIFFNESS AS SPASTICITY

Post by jimmylegs » Sat Nov 05, 2011 12:08 pm

broomdancer: so glad to hear about your positive experiences with magnesium. lots of others report similar improvements both here at TIMS and in my own personal 'real life' :)

sou: does it say on the bottle, how much elemental magnesium is delivered in the 400mg pill?

dania: have you ever had serum or RBC magnesium tested to ensure that your supplemental regimen was absorbing properly? if i had terrible spasticity and magnesium pills did not work, i'd look at serum first and then RBC levels to make sure they were optimal, before i gave up on magnesium as a potential solution.

if a patient is deficient in magnesium and suffering from spasticity, the sooner the deficiency is corrected the better!

@greek: hopefully we can get your levels optimized!
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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dania
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Re: SPASM AND STIFFNESS AS SPASTICITY

Post by dania » Sat Nov 05, 2011 1:57 pm

Jimmylegs, you just do not get it. My spasticity has nothing to do whatever I am or am not taking!!!!! My CBC is NORMAL. My RBC 100% normal. I know the magnesium which I take in powder form with water works as it help with my constipation.
You really do not get it. I am getting to be a quad. All my symptoms are extreme. What you are telling me is that I am not looking after myself, in the best way possible. Many years ago I know of a MS patient that went to a naturopath who told her the reason she had MS was because she did not love herself. We now know that type of thinking is a load of crap. My spasticity totally disappeared above my waist 6 hours after CCSVI procedure and was reduced by 50% below my waist. And I was not taking magnesium at the time. Do you get it? My veins are now !00% blocked. To keep harping at us is just as effective as telling a cancer patient whose treatment did not work that take this and that and you will get better.

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THEGREEKFROMTHED
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Re: SPASM AND STIFFNESS AS SPASTICITY

Post by THEGREEKFROMTHED » Sat Nov 05, 2011 2:31 pm

Wow how ironic. My naturalpath told me i didnt love myslef either!! Sorry about what ur going through are you anticoagulating or have plans to go through another procedure?

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Re: SPASM AND STIFFNESS AS SPASTICITY

Post by Tracker » Sat Nov 05, 2011 5:16 pm

I have had three angioplasties for CCSVI, and they have been absolutely fantastic for energy, reduced fatigue, feeling well, but only the first one did anything for spasticity.

However, I usually take 4 x 25mg Baclofen/day + one at about 3.00am, as I get super stiff legs in bed. The Baclofen definitely helps, but not perfect.

The last three days I have been drinking a glass of Indian Tonic Water in the evening, & one in the morning - and No Baclofen. The Quinnine in the tonic water has been much, much better for me than
the Baclofen.

No stiffness at all at night, & able to bend at the knee easily.

Another MS'er friend of mine has done the same thing, and says it has alleviated spasms & cramp.

I also take LDN & 4-AP - no DMD's

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jimmylegs
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Re: SPASM AND STIFFNESS AS SPASTICITY

Post by jimmylegs » Sat Nov 05, 2011 7:54 pm

dania, may i ask: cbc and rbc *what* is 'normal'??

constipation is one thing, helped by insoluble inabsorbable magnesium - spasticity is something else, helped by soluble absorbable magnesium.

all right: if your serum magnesium is above 0.90 and your rbc magnesium is also high normal, then yes, your spasticity is something magnesium can't help.

other patients with documented magnesium deficiency can and should address this issue.

all the best - please don't feel you need to spend your time here on a topic concerned with resolving someone else's recalcitrant magneisum deficiency.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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dania
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Re: SPASM AND STIFFNESS AS SPASTICITY

Post by dania » Sat Nov 05, 2011 11:23 pm

Normal is whatever is within the normal range.
If angioplasty made my spasticity disappear, hours after getting it done, then as far as I am concerned my spasticity was never related to magnesium.

@THEGREEKFROMTHED, I have had 2 angios. I tried another 3 times with 2 different doctors and both could not get thru. Said my veins are completely blocked with scarring.

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sou
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Re: SPASM AND STIFFNESS AS SPASTICITY

Post by sou » Sun Nov 06, 2011 2:29 am

Blaming JL for our problems and magnesium's inability to help is unfair! She has had the goodwill to help.

Apart from magnesium, is there anything else we could do? How about the indian tonic water? Do you have more information about it?

sou

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jimmylegs
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Re: SPASM AND STIFFNESS AS SPASTICITY

Post by jimmylegs » Sun Nov 06, 2011 5:40 am

wow. i know what the normal range is (ie, useless)

i'm asking if cbc and rbc "magnesium" are normal, and if so what is the exact number with units.

the 'normal' range includes a lot of ms patients, at the low end rather than the high end.

myself, i prefer to be in the 'healthy controls' section of the normal range. for example my uric acid used to be stuck on the ms average of 194. ('normal' range 140-360)

then i identified and fixed my zinc deficiency (mine was a more extreme prob than your typical ms patient) and my uric acid shot up to the 270s. the healthy controls zone is 290-300.

if renewed blood flow delivered more essential nutrients to starved tissues, i can certainly see how venoplasty helped make a difference. i used the klenner protocol's niacin flush in a similar way to send powerful bursts of blood through my veins. ginko biloba also worked, made me a LOT smarter back when i was really sick. don't need it any more thankfully :)

thanks sou, and as for quinine in tonic water, check this out!:

The effects of quinine on the calcium and magnesium content of the sarcoplasmic reticulum and the temperature-dependence of quinine contractures
http://www.springerlink.com/content/k536n165q8t67kx4/

"A significant decrease in the Ca2+ and increase in the Mg2+ content of the terminal cisternae (TC) of the sarcoplasmic reticulum (SR) during quinine contraction was demonstrated by electron probe analysis of rapidly frozen frog muscles."

wiki:
Terminal cisternae are enlarged areas of the sarcoplasmic reticulum surrounding the transverse tubules. These discrete regions within the muscle cell store calcium (increasing the capacity of the sarcoplasmic reticulum to release calcium) and release it when an action potential courses down the transverse tubules, eliciting muscle contraction.

The endoplasmic reticulum (ER) is an eukaryotic organelle that forms an interconnected network of tubules, vesicles, and cisternae within cells.
The sarcoplasmic reticulum (SR), from the Greek sarx, ("flesh"), is a special type of smooth ER found in smooth and striated muscle.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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jimmylegs
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Re: SPASM AND STIFFNESS AS SPASTICITY

Post by jimmylegs » Sun Nov 06, 2011 5:43 am

take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

Cece
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Re: SPASM AND STIFFNESS AS SPASTICITY

Post by Cece » Sun Nov 06, 2011 8:43 am

In summary:
* optimizing magnesium
* loving oneself
* venoplasty of the jugulars

may improve spasticity, or do nothing, depending on the degree of neurological damage as the cause of spasticity. (i.e., if it's vascular-related or nutrient-related, one of the above may help, but if it is severe neurological damage, then all we can offer is comradery.)

We haven't had many answers for the original question. I would guess that spasticity is sometimes relieved and sometimes not by venoplasty. It wasn't one of my symptoms, and it sounds like a hell of a symptom, so I haven't had anything to chime in.

Greek, did you ever have a repeat venoplasty?

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dania
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Re: SPASM AND STIFFNESS AS SPASTICITY

Post by dania » Sun Nov 06, 2011 9:07 am

Cece you are lucky to never have experienced spasticity. And I hope you never do. I too had never experienced it for 20 years. It has only been in the last 2 years, since my veins are blocked, that I have been plagued with it. And it has become more severe as time passes. Also my other symptoms have become much worse too. For me this is proof that blood flow has definitely something to do with these symptoms.

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Re: SPASM AND STIFFNESS AS SPASTICITY

Post by blossom » Sun Nov 06, 2011 10:08 am

for what it's worth--i like dania did not spasm for yrs. thank God i am not as bad as some. But, lately i'm getting a taste of it. there are a few things i've noticed-when i get chiro. adj. it is better because it helps blood flow etc. then a while back the doc put me on potassium i was low, that seems to help. actually as overactive as my bladder is i wonder how my body holds any minerals or vitamins.--but the worst i experenced was a few mo. ago. i really did not have the classic symptoms of a bladder infection. i got checked anyway. bingo, had one. antibiotics cleared it up and took 99 percent of spasms away. i think even though i try and take every known natural remedy to prevent or cure bladder infections i got a feeling i have it running through me more times left unchecked than caught. and yes, i drink lots and lots of water. i wonder about these low grade infections playing games with some of our symptoms. i know it tortured the hell out of the stiffness and spasms.

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