Search found 141 matches

by JCB
Mon Aug 07, 2017 2:03 pm
Forum: Ocrevus (Ocrelizumab)
Topic: Ocrevus questions
Replies: 17
Views: 6865

Re: Ocrevus questions

Has any one recently been on this new drug, and how are you doing? I am PPMS, my doctor would like me to start, I am cautious, thoughts?
by JCB
Sun Aug 06, 2017 3:08 pm
Forum: Ocrevus (Ocrelizumab)
Topic: FDA approves its first drug for PPMS patients
Replies: 5
Views: 2406

Re: FDA approves its first drug for PPMS patients

Has any one recently been on this new drug, and how are you doing? I am PPMS, my doctor would like me to start, I am cautious, thoughts?
by JCB
Tue Jul 30, 2013 5:13 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: WHAT EVIDENCE THAT CCSVI WORKS FOR PPMS????
Replies: 3
Views: 1606

Re: WHAT EVIDENCE THAT CCSVI WORKS FOR PPMS????

I was diagnosed with PPMS in 2007. I had my first CCSVI treatment in Albany, NY, in 2010. I have had multiple other CCSVI treatments in Minnesota since then. My left side jugular just will not stay open, but my right was opened up and remains open. I still can't walk very well, but have stabilized. ...
by JCB
Wed Feb 13, 2013 11:25 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: DrSclafani answers some questions
Replies: 8342
Views: 1616088

Re: DrSclafani answers some questions

Dr. Sclafani, Lot's of good questions, I don't have many good answers. I believe that the large collateral may be the reason I keep stenosing. The veinous blood is taking the path of least resistance, and there is not enough blood traffic to keep it open. I was a fairly early adopter and travelled t...
by JCB
Wed Feb 13, 2013 9:41 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: DrSclafani answers some questions
Replies: 8342
Views: 1616088

Re: DrSclafani answers some questions

Dr Sclafani, In your opinion is one jugular enough? I have had multlple PTA procedures and stent placements to open up my left jugular, the longest it has remained open is three months. I have a large collateral that branches off right above the blockage. My IR is hesitant (and I agree) to stent ove...
by JCB
Tue Dec 18, 2012 6:53 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: exploring CCSVI
Replies: 6
Views: 1186

Re: exploring CCSVI

I also have been diagnosed with PPMS, I have had multiple procedures trying to keep my veins open. I am not seeing the same Neurologist I saw when I was diagnosed. He had no use for CCSVI, but didn't really offer any hope or alternatives (he is a well known MS expert). It was a friendly break up. Th...
by JCB
Tue Oct 30, 2012 10:39 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: DrSclafani answers some questions
Replies: 8342
Views: 1616088

Re: DrSclafani answers some questions

Was there an angioplasty clearing of the stent in between each attempt?
I think that in addition to anticoagulation, flow is what keeps a vein from clotting.
Yes, there was angio and cleaning on each of the multple attempts, each time I left the hospital with good flow.
by JCB
Mon Oct 29, 2012 11:25 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: DrSclafani answers some questions
Replies: 8342
Views: 1616088

Re: DrSclafani answers some questions

drsclafani wrote:
JCB wrote:Still here, still read the forum a couple times a week, still trying to keep my left jugular from clotting.
how are you trying to keep the left jugular from clotting?

Let's see,

First attempt, just Plavix
Then Pradaxa
Then Warfarin
Currently Arixtra/Fondaparinux

Jim
by JCB
Mon Oct 29, 2012 6:35 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: DrSclafani answers some questions
Replies: 8342
Views: 1616088

Re: DrSclafani answers some questions

Still here, still read the forum a couple times a week, still trying to keep my left jugular from clotting.
by JCB
Mon Aug 27, 2012 10:29 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: A possible cause of MS a bacterial infection see video
Replies: 17
Views: 2383

Re: A possible cause of MS a bacterial infection see video

Watching and reading some of the available documents, I have a question for this group. I have had multiple CCSVI procedures, my left IJV continues to want to occlude. Could this be caused by Cpn? Am I waisting my time to try and keep my vein open, because the Cpn is just causing inflamation there?
by JCB
Wed Apr 04, 2012 1:57 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Which Veins?
Replies: 12
Views: 1584

Re: Which Veins?

Thanks for the info.

My right jugular is starting to narrow again. I can say it has been the best 7 months I have had in quite a few years. I still feel pretty good. I am just wondering if there is stenosis in other veins, how it could potentially affect the jugular flow.
by JCB
Wed Apr 04, 2012 12:08 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Which Veins?
Replies: 12
Views: 1584

Which Veins?

Besides the Internal Jugular and Azygous, which veins should be looked at?
by JCB
Tue Jan 24, 2012 8:37 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: have most been treated?
Replies: 24
Views: 2703

Re: have most been treated?

I have been treated multiple times. I still browse the site, but am not very active. I am PPMS and while I have more energy, more alert, less heat intolerance; my right side has continued to slowly progress negatively. I am not even sure that I am progessing, but I am feeling better but not getting ...
by JCB
Mon Jan 09, 2012 11:16 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: ......
Replies: 14
Views: 1508

Re: Clotted Jugular

I will get checked every 2 - 3 months til...? Not sure when the current regimen will change, I was hoping to get off the blood thinners but my Dr. thinks I should stay on them for awhile. Both IJV's are currently open.
by JCB
Fri Dec 30, 2011 7:13 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: ......
Replies: 14
Views: 1508

Re: Clotted Jugular

I am diagnosed PPMS, have had multiple procedures to un-clot my left IJV. I have a covered stent inside the standard mesh stents. At 4 months I am clot free. All of my symptoms are related to my right side. Night time leg spasms have increased the last few weeks. Still have drop foot on my right sid...