Search found 141 matches
- Mon Aug 07, 2017 2:03 pm
- Forum: Ocrevus (Ocrelizumab)
- Topic: Ocrevus questions
- Replies: 17
- Views: 11713
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?
- Sun Aug 06, 2017 3:08 pm
- Forum: Ocrevus (Ocrelizumab)
- Topic: FDA approves its first drug for PPMS patients
- Replies: 5
- Views: 4389
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?
- Tue Jul 30, 2013 5:13 pm
- Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
- Topic: WHAT EVIDENCE THAT CCSVI WORKS FOR PPMS????
- Replies: 3
- Views: 2055
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. ...
- Wed Feb 13, 2013 11:25 am
- Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
- Topic: DrSclafani answers some questions
- Replies: 8342
- Views: 2371029
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...
- Wed Feb 13, 2013 9:41 am
- Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
- Topic: DrSclafani answers some questions
- Replies: 8342
- Views: 2371029
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...
- Tue Dec 18, 2012 6:53 pm
- Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
- Topic: exploring CCSVI
- Replies: 6
- Views: 1820
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...
- Tue Oct 30, 2012 10:39 am
- Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
- Topic: DrSclafani answers some questions
- Replies: 8342
- Views: 2371029
Re: DrSclafani answers some questions
Yes, there was angio and cleaning on each of the multple attempts, each time I left the hospital with good flow.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.
- Mon Oct 29, 2012 11:25 am
- Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
- Topic: DrSclafani answers some questions
- Replies: 8342
- Views: 2371029
Re: DrSclafani answers some questions
drsclafani wrote:how are you trying to keep the left jugular from clotting?JCB wrote:Still here, still read the forum a couple times a week, still trying to keep my left jugular from clotting.
Let's see,
First attempt, just Plavix
Then Pradaxa
Then Warfarin
Currently Arixtra/Fondaparinux
Jim
- Mon Oct 29, 2012 6:35 am
- Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
- Topic: DrSclafani answers some questions
- Replies: 8342
- Views: 2371029
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.
- 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: 3495
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?
- Wed Apr 04, 2012 1:57 pm
- Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
- Topic: Which Veins?
- Replies: 12
- Views: 3004
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.
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.
- Wed Apr 04, 2012 12:08 pm
- Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
- Topic: Which Veins?
- Replies: 12
- Views: 3004
Which Veins?
Besides the Internal Jugular and Azygous, which veins should be looked at?
- Tue Jan 24, 2012 8:37 am
- Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
- Topic: have most been treated?
- Replies: 24
- Views: 4473
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 ...
- Mon Jan 09, 2012 11:16 am
- Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
- Topic: ......
- Replies: 14
- Views: 2391
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.
- Fri Dec 30, 2011 7:13 am
- Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
- Topic: ......
- Replies: 14
- Views: 2391
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...