This Is MS Multiple Sclerosis Community: Knowledge & Support

At Jeff's recent visit to his neurologist, she was going thru his prior prescriptions and asked if he needed baclofen for his muscle spasms.
"No, I haven't used baclofen in two years, since my first angioplasty. My night time spasms are gone." he answered.
Oh, she replied. That's interesting.

The relief of painful myoclonic jerks and muscle spasms has been a huge blessing for Jeff. He sleeps thru the night, whereas prior to his angioplasty, he thrashed and spasmed during the night. He took magnesium (Natural Calm) and baclofen, and still had difficulty with spasms and myoclonic jerks.

What changed?


http://www.neuroskills.com/anoxia.shtml



http://www.wemove.org/myo/myo_pc.html

This is not placebo-- Jeff is asleep. He couldn't control his spasms before, he didn't wish them away. Since he was the first treated, there was no "suggestability" potential for what he would expect after treatment. He had no idea what to expect after angioplasty. Relief of spasms, relief of heat intolerence, relief of fatigue...all happened within days, and continue, two years later.
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

I concur. With me, at least, it was no placebo, as I had completely unexpected benefits (some of which lasted), and could feel the re-stenosis creeping back within a matter of days. I also went into it it with more doubts than expectations. My mind was trained for disappointment.

I was under-treated. Twice. Next time, Doc Sclafani is gonna hook me up - I hope (no pressure, Doc! except for about 15 atmospheres...).

I loved Poland though!

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My name is not really Johnson. MSed up since 1993

My right leg had terrible spasms that tightened my muscles to make the leg extend and foot curl up.

I also had a higher tendency to have spasms after a more active day.

This decreased after first treatment but returned.

I then had a stent placed in my iliac and left ijv was ballooned high up.

Spasms changed instantly! (next day!)

Now my spasms occurred in both legs. My muscles would tighten to make both legs come up into a fetal position. Wild!

Those spasms have gradually subsided and are now 100% gone!

I do not see how it can be said that this is not related to angio treatment.

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If you can't explain it simply, you don't understand it well enough. - Al Einstein

One of the first things I can remember when my husband was diagnosed in the mid 70's was that when he was sleeping, his legs and sometimes his whole body would jerk. Seems like in timed intervals. Still today it continues when he is asleep. Some nights are better than others.

He also now has leg spasms mostly in his right leg (which is also swollen). Was told it was due to leg spasms causing damage to the valves in his leg.

We leave tomorrow morning for Brooklyn. Wonder what Dr. Sclafani will find?

Good Luck MaggieMae!

I'm sure Dr. S. will check those iliacs! Swollen leg? Spasming right leg? Very interested to see what is found!!!

Please keep us posted! Thanks!

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If you can't explain it simply, you don't understand it well enough. - Al Einstein

I'm sure Dr. S. will check those iliacs!

Thank you Clever. That is what I was thinking (and hoping) too.

Good luck MaggieMae ... I know it's been a long time waiting for you and your husband ... you'll have people back in Pittsburgh rooting for you!

could the muscle spasms be a tentative to open the vessels then ? Every time I get one in my limbs I feel as if the tightness and pulling sensations are greatly lessened...
ALso, that may mean that CCSVI is not only in the veins of our neck but evrywhere in the body...hum...

Bingo! Chronic vasculitis.

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My name is not really Johnson. MSed up since 1993

it's interesting you mention neck stiffness as my gp recently sent me to the hospital because he thought i had meningitis , and i don't . since my procedure 3 weeks ago a nurse friend of mine said it's easy to lift my head now because my neck is loose.

I too have less muscle tone (see my oesteopath's comments in my update article). We do not know if this is due to oxygen in nervous tissue or muscle, maybe less toxins in tissues or something else. Let's enjoy the reduced muscle tone etc. Explanations without sufficient evidence could be misleading.

MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

So my mother might have lived a bit longer, or avoided her dialysis, if she had had a CCSVI procedure? She had vasculitis. They said it was autoimmune.

BTW, do you mean to say if I still have jerks and heat-intolerance I have not been completely treated?

I don't understand the mechanism for hypoxia to cause these things. Any ideas? With me it seems to come on when I heat my legs, and go away if I cool them.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Cooled tissues have less oxygen & glucose consumption. That's why doctors sometimes cool people to preserve tissue.

The opposite is also true.....the oxygen and glucose consumption of a hot person, like in fever, is very high, and if there is a physiologic reason that the needs can not be met pain , spasticity, severe fatigue, delirium, seizures all could occur depending on how fast it occurs.

Hope this helps your understanding.
Keep in mind that the normal brain uses 70% of the glucose from our food....even more duriing intense thinking. Most people think muscles use more. Not true.

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Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-

Thank you for that, I've wondered about the heat intolerance.

What do you think it means that I still seem to have heat intolerance, despite being post-procedure and seeing other improvements?

For myself, I am over five months post treatment and my "restless legs" have not returned. I had been taking Requip medication for over two years. I could not sleep without it. Shortly before treatment my medication was "upped" as my symptoms were starting mid-day. My sleep study confirmed over 500 periodic leg movements nightly. I have not had to take medication since the NIGHT BEFORE my treatment. None needed to date. My fiance has confirmed and is astouonded that I don't have "flipper" legs anymore. At least now I get a good nights sleep. If this is "placebo' I will take it