Any PWMS would consider JUST having CCSVI and no RX?

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

CCSVI or CCSVI+RX?

Yes, just CCSVI for me.
21
88%
No, I would want both CCSVI and an RX.
3
13%
 
Total votes : 24

Any PWMS would consider JUST having CCSVI and no RX?

Postby CuriousRobot » Thu Sep 15, 2011 12:21 pm

I am kind of curious as to how people view approved treatments here:

Everyone here has been RRMS at some point, I assume, with early clinical disease (i.e., low number of relapses, low EDSS, low lesion count). Imagine hypothetically, if this is the case, would you have the CCSVI operation performed and not go on any approved treatment for MS?

-CR
User avatar
CuriousRobot
Family Elder
 
Posts: 173
Joined: Tue Nov 02, 2010 4:00 pm

Advertisement

Re: Any PWMS would consider JUST having CCSVI and no RX?

Postby 1eye » Thu Sep 15, 2011 12:37 pm

I have been refused DMDs by two neurologists. They say it's because I have SPMS. I voted no. Regardless of what Dr. Zamboni says, I cannot get a prescription, even for Fampridine. I do suspect CCSVI may speed up the pipeline, but I think I've been written off.
Last edited by 1eye on Thu Sep 15, 2011 12:47 pm, edited 1 time in total.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
User avatar
1eye
Family Elder
 
Posts: 2931
Joined: Wed Mar 17, 2010 4:00 pm
Location: Kanata, Ontario, Canada

Re: Any PWMS would consider JUST having CCSVI and no RX?

Postby CuriousRobot » Thu Sep 15, 2011 12:38 pm

1eye wrote:I have been refused DMDs by two neurologists. They say it's because I have SPMS. I voted no.


My question was a hypothetical one. If you were early RRMS, would you only get CCSVI performed?
User avatar
CuriousRobot
Family Elder
 
Posts: 173
Joined: Tue Nov 02, 2010 4:00 pm

Re: Any PWMS would consider JUST having CCSVI and no RX?

Postby 1eye » Thu Sep 15, 2011 12:52 pm

I think I may have gone with Dr. Zamboni in that case. Either way, not just CCSVI. Not the kitchen sink, but CCSVI causes autoimmunity, and it's hard to know when you will restenose. If you had ever lost the use of a limb, you might know what you would try.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
User avatar
1eye
Family Elder
 
Posts: 2931
Joined: Wed Mar 17, 2010 4:00 pm
Location: Kanata, Ontario, Canada

Re: Any PWMS would consider JUST having CCSVI and no RX?

Postby dania » Thu Sep 15, 2011 3:51 pm

My neuro did not want me on any of the usual drugs for MS as I had had cancer. And all the CRAB drugs suppress the immune system, which one does not want to do with cancer.
User avatar
dania
Family Elder
 
Posts: 1088
Joined: Wed May 12, 2010 3:00 pm
Location: St Lazare Quebec

Re: Any PWMS would consider JUST having CCSVI and no RX?

Postby civickiller » Thu Sep 15, 2011 4:09 pm

hey 1eye, theirs no drugs available for SPMS? i ask because i might be SPMS already, how did u know u changed?
User avatar
civickiller
Family Elder
 
Posts: 557
Joined: Thu Feb 04, 2010 4:00 pm
Location: Hawaii

Re: Any PWMS would consider JUST having CCSVI and no RX?

Postby DougL » Fri Sep 16, 2011 4:40 am

civickiller wrote:hey 1eye, theirs no drugs available for SPMS? i ask because i might be SPMS already, how did u know u changed?


i can't speak for 1eye, but my partner knew she changed when the drugs stopped working. years ago, she would get an attack and then fill herself with drugs to recover - RRMS. now there is no recovering, just slow decline - SPMS

the only drugs she takes now is to try to improve her quality of life.
User avatar
DougL
Family Elder
 
Posts: 374
Joined: Mon Jul 11, 2011 3:00 pm

Re: Any PWMS would consider JUST having CCSVI and no RX?

Postby CuriousRobot » Fri Sep 16, 2011 9:14 am

civickiller wrote:hey 1eye, theirs no drugs available for SPMS? i ask because i might be SPMS already, how did u know u changed?


I believe that SPMS is determined by brain atrophy.
User avatar
CuriousRobot
Family Elder
 
Posts: 173
Joined: Tue Nov 02, 2010 4:00 pm

Re: Any PWMS would consider JUST having CCSVI and no RX?

Postby Cece » Fri Sep 16, 2011 1:38 pm

Age forty is the most common age for conversion from RR to SP, although it can happen earlier or later. I am not aware of any connection between SP and brain atrophy, although atrophy often does increase over the course of the disease.
Cece
Family Elder
 
Posts: 9024
Joined: Mon Jan 04, 2010 4:00 pm

Re: Any PWMS would consider JUST having CCSVI and no RX?

Postby civickiller » Fri Sep 16, 2011 1:49 pm

DougL wrote:i can't speak for 1eye, but my partner knew she changed when the drugs stopped working. years ago, she would get an attack and then fill herself with drugs to recover - RRMS. now there is no recovering, just slow decline - SPMS

the only drugs she takes now is to try to improve her quality of life.


i wonder if i switched to SPMS already, my last 2 doses of solumedrol didnt help at all when it had worked every time before. not on any DMD's
User avatar
civickiller
Family Elder
 
Posts: 557
Joined: Thu Feb 04, 2010 4:00 pm
Location: Hawaii

Re: Any PWMS would consider JUST having CCSVI and no RX?

Postby CuriousRobot » Fri Sep 16, 2011 1:56 pm

Cece wrote:Age forty is the most common age for conversion from RR to SP, although it can happen earlier or later. I am not aware of any connection between SP and brain atrophy, although atrophy often does increase over the course of the disease.


[Data of MRI and neuropsychological tests predict the course of typical remitting multiple sclerosis during five years].
Zh Nevrol Psikhiatr Im S S Korsakova. 2011;111(2 Suppl 2):29-37.

Abstract

A complex study of 50 patients with active typical remitting multiple sclerosis (MS) was carried out. Neuropsychological testing using Wechsler and Stroop tests and MRI of the brain with the morphometric analysis of focal and diffusive changes were used in the study. Patients were stratified into two subgroups by the changes in the performance of neuropsychological tests. The disease course was assessed during five years. In all cases, the natural course of the disease, i.e. when patients did not receive disease modifying drugs, was analyzed. The transition to secondary progressive MS and the marked increase in MS severity on the EDSS were found in the subgroup of patients who demonstrated changes in the neuropsychological test performance. The strongest correlation was observed between EDSS scores and the diffusive atrophy of the brain white matter on MRI. The data of neuropsychological testing and some brain MRI parameters may be recommended as a predictive test in remitting MS.

http://www.ncbi.nlm.nih.gov/pubmed/21919232

It's in Russian, but they are still scientists. Maybe this helps...
User avatar
CuriousRobot
Family Elder
 
Posts: 173
Joined: Tue Nov 02, 2010 4:00 pm

Re: Any PWMS would consider JUST having CCSVI and no RX?

Postby CuriousRobot » Fri Sep 16, 2011 3:36 pm

So, therefore, I wouldn't consider age to be a reliable factor in determining progression. Nor would I consider something as subjective as "CRAB drugs stopped working for me," because, after all, for two reasons: 1) MS does not typically strike at a specific age group (which, if it did, would make Cece's argument more compelling) and 2) Individual response and tolerability to CRAB drugs is exactly that: individual and unique to that specific person (some people develop a "tolerance" to interferon [antibodies, etc.] while others do not). What's worse of all is that since MS is so seemingly hopeless (without a readily attainable [a pill, a shot], foreseeable [I need to do steps a, b, and c] or acceptable [mosts neuros hate the thought of CCSVI] cure), MSers may be inclined to a bias in interpreting their own disease progression, if they are not privy to something more objective like MRI lesion count, total brain volume, scores on neuropsychological or cognitive tests.
User avatar
CuriousRobot
Family Elder
 
Posts: 173
Joined: Tue Nov 02, 2010 4:00 pm

Re: Any PWMS would consider JUST having CCSVI and no RX?

Postby Cece » Fri Sep 16, 2011 4:11 pm

The tendency of RR to convert to SP at around age 40 is something I've read many places. Wikipedia has this:
The age of onset for the primary progressive subtype is later than for the relapsing-remitting, but similar to mean age of progression between the relapsing-remitting and the secondary progressive. In both cases it is around 40 years of age.[1]

with the research cited [1] being this:
http://www.ncbi.nlm.nih.gov/pubmed/18970977

ms.about.com says this:
People with later age of onset: RRMS tends to move into SPMS around age 40. This means that people who were diagnosed with RRMS at a later age tend to move more quickly into SPMS. Again, this is in untreated RRMS.

http://ms.about.com/od/multiplesclerosi ... s_spms.htm
but no supporting research is listed.

I'd be surprised if it's stated as frequently as it is, to learn that there is no research supporting it, but I haven't the time to dig through google scholar, so who knows.

I am approaching 40 in a few years, so it is a matter of some concern. Age 39 - 40 is also when the brain peaks in its amount of myelin, in the healthy population, and after that, gradually declines.
Cece
Family Elder
 
Posts: 9024
Joined: Mon Jan 04, 2010 4:00 pm

Re: Any PWMS would consider JUST having CCSVI and no RX?

Postby CuriousRobot » Fri Sep 16, 2011 4:18 pm

Thanks Cece. I'm personally curious as to when you were diagnosed. Were you having MS-like symptoms when you were in your 20s, if you were diagnosed at a later age? Or did it all come about at the same time but when you were older, but close to 40?
User avatar
CuriousRobot
Family Elder
 
Posts: 173
Joined: Tue Nov 02, 2010 4:00 pm

Re: Any PWMS would consider JUST having CCSVI and no RX?

Postby Cece » Fri Sep 16, 2011 4:32 pm

You have mentioned you are curious twice in this thread, CuriousRobot, it amuses me because of your name. :)

I was diagnosed at age 30, which is actually the most common age for MS diagnosis, but I had symptoms in my teens and twenties that could have led to a diagnosis had I followed recommendations such as, "See a neurologist," as suggested by my optometrist.
Cece
Family Elder
 
Posts: 9024
Joined: Mon Jan 04, 2010 4:00 pm

Next

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service