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

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
Post Reply
Cece
Family Elder
Posts: 9335
Joined: Mon Jan 04, 2010 3:00 pm
Contact:

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

Post by Cece »

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
User avatar
scorpion
Family Elder
Posts: 1323
Joined: Wed Nov 05, 2008 3:00 pm

Re: "first time I've had my symptoms actually regress&q

Post by scorpion »

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?
User avatar
pklittle
Family Elder
Posts: 341
Joined: Sun Mar 07, 2010 3:00 pm

Post by pklittle »

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

Cece have you gone in yet for your round?
User avatar
HappyPoet
Family Elder
Posts: 1414
Joined: Thu Jul 09, 2009 2:00 pm
Contact:

Post by HappyPoet »

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.
Cece
Family Elder
Posts: 9335
Joined: Mon Jan 04, 2010 3:00 pm
Contact:

Post by Cece »

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!
User avatar
SaintLouis
Family Elder
Posts: 153
Joined: Sun Dec 13, 2009 3:00 pm

Post by SaintLouis »

Cece - I thank you for the positive stories, they've cheered me up too.
User avatar
hopeful2
Family Member
Posts: 77
Joined: Sat Feb 06, 2010 3:00 pm
Location: San Francisco Bay Area, Calif.
Contact:

Post by hopeful2 »

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?
User avatar
Gordon
Family Elder
Posts: 296
Joined: Wed Jan 06, 2010 3:00 pm

SCORPION

Post by Gordon »

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
concerned

Re: SCORPION

Post by concerned »

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.
User avatar
CD
Family Elder
Posts: 217
Joined: Sun Dec 19, 2010 3:00 pm
Location: USA
Contact:

Re: SCORPION

Post by CD »

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.
User avatar
thornyrose76
Family Elder
Posts: 462
Joined: Mon Nov 23, 2009 3:00 pm

Post by thornyrose76 »

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

Re: SCORPION

Post by concerned »

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.
Cece
Family Elder
Posts: 9335
Joined: Mon Jan 04, 2010 3:00 pm
Contact:

Post by Cece »

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.
User avatar
blossom
Family Elder
Posts: 1394
Joined: Thu Dec 03, 2009 3:00 pm
Location: south western pa.
Contact:

ccsvi

Post by blossom »

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.
User avatar
garyak
Family Elder
Posts: 314
Joined: Sun May 30, 2010 2:00 pm
Location: grande prairie , alberta,canada
Contact:

Post by garyak »

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.
Post Reply
  • Similar Topics
    Replies
    Views
    Last post

Return to “Chronic Cerebrospinal Venous Insufficiency (CCSVI)”