This Is MS Multiple Sclerosis Community: Knowledge & Support

Good result's initially with balance, spasticity, bladder, gait. Lasted less then a month. At 3 month doppler, just got the result's in the mail...3 out of 5 zamboni protocol positive for CCSVI. is mild but there.

1) Thickened valves on right and left IJV's
2) Reflux with postural change: positive on left only
3) Asymmetric flow in deep cerebral veins: positive at 0 and 90 degree's

Don't really know what to do at this point...think going in again is risky with damage to vein's...but waiting on more research...hopefully quick, scared of tysabri (an option from Neuro)...loosing leg's, energy, QOL has been not so good in the past 3yrs. physically. Walk with foot drop and cannot stand long enough to cook, pain, fatigue (extreme), bladder, nystagmus when laying at a certain angle, walk with cane(from house to car on a good day)cog-flipping fog, with repeating sentence's because guess what? forgot I already said it, not but 4 lesion's on brain and 2 on spinal cord, last edss was done by neuro 5-5.5 (can't remember lol)..33 year's old. First noticeable symptom 23 year's of age (pain in leg's) at 30 could no longer work as a Nurse...wait do I add mild depression to my symptom's????

Anyway, quick fill in for all those wondering! God Bless all of us suffering!

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GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...

*hugs* leetz.

Not many months ago when a procedure didn't work the thought was to go again with someone using big balloons.

Dr. Cumming has said that for other veins, routine dilatation every 3-6 months is common. (I am thinking about this for myself, if my ultrasound next month still shows CCSVI, what do I do?)

You are dealing with far too much, leetz, but from what I have seen you are doing it with grace.

AW...many thank's for your support...(made me smile)..I think Dr. Siskin is great (my IR) and I am going to wait on God and when I get the answer...I will get it done again by Dr. Siskin (he really is unique in the respect that he care's)...what would they do about thickened valves anyway? Could they even fix that? just thinking.......

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GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...

The question may be; what can you do about thickened valves. Perhaps start with Vit. E, fish oils, other pure oils, sulpher (MSM, garlic, onions, broccoli, cabbage...), Cheerleader's Endothelial Health Program, and such. Anti-fibrininin supplements such as nattokinase, etc., may be helpful too. At the very least, your veins will be more resilient and pliable - to respond to, and compliment PTA treatment(s).

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My name is not really Johnson. MSed up since 1993

many thank's!!!

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GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...

Dear leetz, if you really want to get well, re think. You may want to visit the stem cell forum to learn some interesting stuff. Hard scientific data, no speculation. Wish you well.

I suggest that in the meanwhile, you consider an iron removal protocol to minimize the "MS" symptom cascade. Most here are focused on the actual CCSVI procedure and forget that the key thesis of Dr. Zamboni's theory is about the harmful effects of free iron deposition.

For me personally getting rid of iron has been a major help in dealing with symptoms and their progression.

Take care and good luck!

Donnchadh

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Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

How have you been able to do that? Do you have any metric as to wheter it has been successful?

You have to realize that my undertaking is not a "double-blinded" medical research project. Its my own personal journey trying to figure out what works, what doesn't, and what seems to have no effect either way.

Long before I ever heard of CCSVI, I found out that donating whole blood really helped with fatigue-why I don't know. Just that I felt better.

Same with many other supplements; a wide range of results.

The only "metric" is my totally subjective evaluation is how I feel.

Donnchadh, who is not a doctor nor plays one on TV. That's why I am reluctant to publicly list the supplements I take-they might not be appropriate for someone else. It would be very bad karma to cause someone else harm.

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Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

I am not sure why whole blood donation might help. Supplements might make sense, some chelation going on. What supplements? I promise not to hurt myself.

By donating a pint of whole blood, the body is forced to draw down iron stores to start the process of creating replacement red blood cells. At the "heart" of hemoglobin is iron. That's why red blood cells can transport oxygen to the body; iron captures and releases it.

Donnchadh

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Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

donchadh...you can tell us you know...just what u take or pm us and let us know that has nothing to do with Karma? it is just what works for you...

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GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...

Donnchadh, I am quite interested in donating blood. I went to the website ironoverload.org which someone mentioned on TIMS. I would like to ask you how you can give blood if you have an MS diagnosis? Don't the blood banks require a clean bill of health? At least no MS anyway? Also, how often do you give blood? Thanks.

WeWillBeatMS

The blood bank I go to does not specifically ask if you have a diagnosis of "MS" but rather enumerates a lengthy list of drugs used to treat "MS." I have never taken any of the auto-immune "MS" drugs listed.

This blood bank checks for just about every infectious disease there is, and checks my blood vitals before accepting a donation.

There always remains the option of getting a GP's order for blood draw but in that case you have to pay.

I have been donating for long time and never had any rejections from the blood bank.

Besides I an diagnosed with CCSVI, which is not infectious in any case.

I donate on an eigth week cycle.

Donnchadh

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Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

Ok, here's how I understand the dynamics of Dr. Zamboni's blood reflux theory.

Picture yourself in a rowboat. You notice that there are water leaks in 4 different locations. What can you do? Try to plug the leaks (i.e., CCSVI procedure by an IR) or just start pailing out the water (trying to get rid of free iron) or both.

The trouble with just pailing out the water is that you can never do it fast enough or completely-some water (iron is still being deposited) continues to flow into your rowboat. Still its better then doing nothing; at least you are slowing the rate the water is coming in.

That's why having a CCSVI procedure is essential-you must stop the water gushing in if it all possible. Sometimes not all leaks can be plugged (treated by an IR) or they will reopen.

Also after your IR says its safe to do so, you can try to pail out the remaining water. Or not. We are really into unchartered territory here.

I hope this makes sense.

Donnchadh

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Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!