"first time I've had my symptoms actually regress"

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

"first time I've had my symptoms actually regress"

Postby Cece » Sun Jan 23, 2011 12:14 am

The "liberation treatment" certainly hasn't cured my MS. But it seems to have made most of my MS symptoms less severe and it's like I turned the clock back 15 years.

I'm only a clinical trial of one but the best example of an observable change is that I can now stand up and keep my balance for a couple of minutes where before I used to have trouble standing up long enough to pull up my pants.

Some may trivialize such modest improvement but it's the first time I've had my symptoms actually regress. My symptoms were always slowly progressing downward before, even though I've been taking Rebif injections, costing $22,000 per year, for more than a decade.


http://www.intelligencer.ca/ArticleDisp ... ?e=2920563
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Re: "first time I've had my symptoms actually regress&q

Postby scorpion » Sun Jan 23, 2011 4:28 am

Cece wrote:
The "liberation treatment" certainly hasn't cured my MS. But it seems to have made most of my MS symptoms less severe and it's like I turned the clock back 15 years.

I'm only a clinical trial of one but the best example of an observable change is that I can now stand up and keep my balance for a couple of minutes where before I used to have trouble standing up long enough to pull up my pants.

Some may trivialize such modest improvement but it's the first time I've had my symptoms actually regress. My symptoms were always slowly progressing downward before, even though I've been taking Rebif injections, costing $22,000 per year, for more than a decade.


http://www.intelligencer.ca/ArticleDisp ... ?e=2920563


What's up with all the anecdotal stories? Is there something new I am missing. I mean these "success" stories have been around from day 1,right?
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Postby pklittle » Sun Jan 23, 2011 7:52 am

Perhaps they should be in one thread rather than each story having their own.

Cece have you gone in yet for your round?
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Postby HappyPoet » Sun Jan 23, 2011 9:47 am

Thank you, Cece, for the breath of fresh air you brought to the forum. :)

For me, the page moves fast enough for the threads not to be bothersome; plus, as adults, we are, hopefully, intelligent enough to be able to pass by any threads we don't want to read, right?

I like to see the geographic diversity among these types of articles which makes me feel happy for all those around the globe that are being helped. I also like learning about the different presentations that symptom improvement takes.
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Postby Cece » Sun Jan 23, 2011 11:03 am

I've spent a lot of time focusing on the negative side of post-procedure complications, I wanted to step back and celebrate the positive. At ISET there was mention that the intense electronic scrutiny of complications is detrimental. I am still thinking that through.

The other reason I am sharing the positives this week is that it cheers me up and I could use some cheering! My dang insurance has not cleared credentialing, I was supposed to be treated in five days and now it's been pushed back.

HappyPoet, I agree with you on all that you said. I also like the commonalities, like fatigue reduction and cold feet that are now warm, that made such an impression on me when I first heard of them!
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Postby SaintLouis » Sun Jan 23, 2011 11:05 am

Cece - I thank you for the positive stories, they've cheered me up too.
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Postby hopeful2 » Sun Jan 23, 2011 11:11 am

Cece, I appreciate your contribution to the discussions here on TIMS. It saddens me to see posts that are disrespectful and add nothing to what we're talking about.

Personally I try to skip over a lot of stuff but I thought I'd jump in here in case it helps you gloss over any garbage posts that landed on your well-intentioned thread.

Any luck with your insurance yet?
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SCORPION

Postby Gordon » Sun Jan 23, 2011 12:32 pm

I always get a kick out of you. To date I have seen nothing that you have ever posted that has added any value.

G
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Re: SCORPION

Postby concerned » Sun Jan 23, 2011 1:06 pm

Gordon wrote:I always get a kick out of you. To date I have seen nothing that you have ever posted that has added any value.

G


Was that about Cece or hopeful2? Either way it's terribly rude.
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Re: SCORPION

Postby CD » Sun Jan 23, 2011 2:04 pm

concerned wrote:
Gordon wrote:I always get a kick out of you. To date I have seen nothing that you have ever posted that has added any value.

G


Was that about Cece or hopeful2? Either way it's terribly rude.



If you look at the topic heading SUBJECT on Gordon's post:
Re: SCORPION
That was who Gordon was referring to not Cece or hopeful2. Apparently Scorpion did not care for Cece's post on positive outcomes of CCSVI. He thinks it's old news.

Well, IMO, if anything at all is positive in a person's health or condition, no matter how trivial, or by what method, it is a BIG thing and important.

Negatively feeds negatively to the mind. We should try to be more positive, maybe life would be fun even if we are physically and/or mentally challenged by a disease or disorder.
**Play nice kids, there are real people on the other side of the monitor.
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Postby thornyrose76 » Sun Jan 23, 2011 2:15 pm

It's nice to hear the positive, there's no denying it exists... :wink:
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Re: SCORPION

Postby concerned » Sun Jan 23, 2011 5:58 pm

CD wrote:
concerned wrote:
Gordon wrote:I always get a kick out of you. To date I have seen nothing that you have ever posted that has added any value.

G


Was that about Cece or hopeful2? Either way it's terribly rude.



If you look at the topic heading SUBJECT on Gordon's post:
Re: SCORPION
That was who Gordon was referring to not Cece or hopeful2. Apparently Scorpion did not care for Cece's post on positive outcomes of CCSVI. He thinks it's old news.

Well, IMO, if anything at all is positive in a person's health or condition, no matter how trivial, or by what method, it is a BIG thing and important.

Negatively feeds negatively to the mind. We should try to be more positive, maybe life would be fun even if we are physically and/or mentally challenged by a disease or disorder.
**Play nice kids, there are real people on the other side of the monitor.


Sorry I never read those subject headings. My bad.
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Postby Cece » Sun Jan 23, 2011 6:44 pm

I think it was valid enough of scorpion to wonder why in two days I'd posted eight news reports. I took no offense. Although if I wouldn't put the "success" in quote marks! This report was from someone with progressive MS, who had never had it improve, only always slowly worsening. And now he can stand for a few minutes, when before he could not.
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ccsvi

Postby blossom » Sun Jan 23, 2011 7:46 pm

we all read about or have even experienced the negative stuff about ccsvi. we all want to be amongst the ones who get the amazing improvements. it is good to hear the positive and the negative.

one thing for sure is we do not want the experiences to stop coming.

ccsvi is here to stay and although far from perfect at this point-it is stories like this that reassure us that ccsvi is well worth fighting for and supporting however we can.
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Postby garyak » Sun Jan 23, 2011 7:50 pm

what is significant with these smallish improvements is that they allow you to regain some independence where you may have needed assistance previous for certain daily tasks. I know that its done that for me.
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