Search found 63 matches

by Sawdoggie
Tue Mar 29, 2011 10:48 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Six month milestone for BooBear
Replies: 8
Views: 1464

Glad to hear you are doing well! It is hard to believe it has been 6 months already. I am in the same boat, no problems and I tend to forget about all of this stuff most of the time which is my ultimate goal! (for those wondering, we were treated on the same day in Albany)
by Sawdoggie
Sun Dec 19, 2010 11:17 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: What's not found by some is found by others
Replies: 9
Views: 1639

I had an MRV that hinted at some issues and the venogram found major issues, including an essentially closed left jug that looked okay on the MRV (blood was flowing in it, it was just coming in and recirculating back up but the movement in it showed a nice picture on MRV). I was amazed at how much t...
by Sawdoggie
Sun Dec 19, 2010 11:10 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Ms, but no CCSVI
Replies: 4
Views: 1589

I was treated by CC in August and they found and fixed significant issues with both juglars and my azy. Fatigue and headaches were my main complaint going in (I had no motor disabilities) and I have to say they are gone. Sure, there are times I am tired like anyone else, but I can attribute it to no...
by Sawdoggie
Fri Nov 12, 2010 10:45 am
Forum: Drug Pipeline
Topic: gilenia / fingolimod / FTY720
Replies: 17
Views: 12994

I guess this is a question for the mods, but should Gilenia have it's own forum folder with the others as it is now an approved treatment?
by Sawdoggie
Fri Nov 12, 2010 8:19 am
Forum: Betaseron
Topic: Post-injection pain?
Replies: 5
Views: 6298

Where I inject is sometimes slightly sore if I poke on it the next day. The injections do sometimes sting like hell, especially in my arms, but generally there is no pain after the injection is finished.
by Sawdoggie
Thu Nov 11, 2010 7:20 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Americans treated in hospital-Albany
Replies: 7
Views: 1413

My insurance company settled with the hospital for around $19,500 (charges were around $24,300 before "provider agreed upon savings") and the charges billed separately from Community Care were just under $3,000 of which my insurance picked up roughly half as my insurance recognized CC but CC did not...
by Sawdoggie
Wed Nov 10, 2010 11:45 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Worth it to get a MRV??
Replies: 10
Views: 1971

What the MRV that I had done and what they found through a venogram were significantly different. The MRV showed some issues, just not to the extent of what was actually found. An MRV doesn't hurt, especially if your insurance will pick it up, and it could provide justification for intervention. If ...
by Sawdoggie
Fri Nov 05, 2010 8:55 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Another 3mo report
Replies: 4
Views: 1602

Another 3mo report

While I have things in the tracking thread it is buried in there. I just got back from my 3mo ultrasound and everything looks great and flowing in the correct direction. I was treated in Albany in mid-August (blocked left LIJ, severe stenosis in RIJ, irregularities in the azygous... almost 4 hours o...
by Sawdoggie
Tue Oct 12, 2010 9:35 am
Forum: Drug Pipeline
Topic: Novartis Gilenya MS Pill to Cost $48,000 a Year
Replies: 14
Views: 5581

The reason that they will charge so much for this is that a) government programs will pay it versus having a backlash; b) private insurance companies will do the same; c) the NMMS is spineless in objecting to this on our behalf and instead focuses on the "generous patient assistance" programs of big...
by Sawdoggie
Tue Sep 28, 2010 1:11 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Up Close and Personal with CCSVI
Replies: 13
Views: 2931

The subtle symptoms you described sound just like what I had. No real obvious symptoms of MS but these little things like restless sleep, not really feeling "there" in the mornings, etc. An MRV showed a potential problem with my right jugular but when I was treated, they found the left IJV completel...
by Sawdoggie
Wed Sep 01, 2010 11:13 am
Forum: Betaseron
Topic: Scared - any advice?
Replies: 7
Views: 5878

I have been on Betaseron for the past 15 months (dx'd April '09) and really have not had any of the side effects. I was in the same boat, the neuro was concerned due to the number of lesions, o-bands, etc. that I had and felt that I was high risk for a relapse. The only side effect, if you want to c...
by Sawdoggie
Tue Aug 17, 2010 5:53 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI tracking project-POST PER P.1 FORMAT ONLY
Replies: 163
Views: 283749

CCSVI TRACKING MS HISTORY Name (if want to give other than TIMS login name): Male/Female: (M/F) Male Age: 36 Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): RRMS/CIS(?) diagnosed 04/2009 Lesion locations (most affected side, if known), number: 14 bilateral, 3-4 C2-C6 MS t...
by Sawdoggie
Fri Mar 26, 2010 7:22 pm
Forum: Natural Approach
Topic: all things vitamin D
Replies: 1036
Views: 110608

When I was diagnosed about a year ago my vitamin D level was 17 ng/ml and the neurologist recommended 1,000 IU a day. After some reading I upped that to 6,000 IU a day and after 6 months my level had risen to 77 ng/ml by December. I have kept that dosage and will be tested again in around two months...
by Sawdoggie
Wed Feb 10, 2010 8:52 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Is it 80% for CDMS?
Replies: 37
Views: 6342

"...The researchers also found fewer cases of CCSVI in patients who had experienced a single MS attack, called clinically isolated syndrome, compared to those with more advanced symptoms of the disease -38 per cent versus about 80 per cent..." Nowhere did I see where "more advanced symptoms" was def...
by Sawdoggie
Wed Feb 10, 2010 8:46 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Buffalo Study
Replies: 85
Views: 17397

Cah ... I was thinking the exact same thing ... that a lot of MS people probably brought relatives with them who may have volunteered to be tested - which could elevate that number. This was one of my first thoughts as well. When I participated, my father (no MS) came along and participated as well...