Whatsreallygoingon,
My symptoms started totally looking like MS about 3 years ago, with exacerbation’s 2-3 times a year that left me worse and weaker after each flare. Prednisone helped tremendiously. But, no lesions on MRI’s. I kept looking at MS and when the info about CCSVI was coming out, I read up and watched it for a while. Then, in 1/2011 Arizona Doppler was going to be in Seattle to do CCSVI screenings and my husband and I decided to get the imaging done, as none of my doctors were figuring anything out at the time. While waiting for my appt time, I had convinced myself this was a waste of time, that I couldn’t have CCSVI, etc. And yet, I had/have it, and not a borderline case, but pretty bad (met 4 of the 5 Zamboni Protocol criteria). Back then, it was thought that anyone with CCSVI had MS, by default. I think that view is changing, though I think untreated it will progress. Eventually people like you and I will/would probably have lesions. I had venoplasty last April and my reduced flow was severe in several veins. I went back again in July 2011 to have my ovarian vein blocked (trying to deal with heavy, heavy bleeding and from my first venography we knew that because of all my vein issues a lot of blood flow was going backwards through the ovarian vein to the uterus) and a stent put in the left iliac because of May-Thurners and my IR looked at my other veins while I was in there and all but one were exactly the same as they were before my first venoplasty just 3 months previously. I need stents, but my IR wants to wait till the dissolvable stents are available in the US (years away still). Since then I learned more on this site about how all these things (POTS, EDS, CCSVI, Mast cells, etc.) are interrelated.Some of my neurological symptoms are still better since having my CCSVI treated, but most of the symptoms that went away for the first 6 weeks after the first venoplasty, are back… and some, like the POTS, continue to get worse. I didn’t have any relief after the second venoplasty, except that my left leg has stopped swelling due to the stent placement. Looking back, the day before my procedure I had a severe flare up from getting too warm, so mast cells or cytokines were probably running rampant… not a good place to be when having this procedure, and I think that is why I noticed no changes. Also, my left juggler, which is/was 80% stenosed, has been painful off and on ever since that venoplasty. Not really sure what that means, but makes me think things are swollen and backed up.
Im almost postive all my brain stuff has ALOT to do with this! 7 years ago i was diagnosed with pseudtotumor ceribri during my pregnancy. My preussures get insanely high. I have topped out on spinal taps. my normal range is inbetween 40 and 50ish. I started diamox during pregnancy but it was never tested with pregnant women. So they didnt keep me on it long. After the pregnancy they went spinal tap happy! i had around 30 to 40ish spinal taps. with no relief. Finally getting a shunt put in dec 6th of 04. only to get meningitas twice. (meningitas being all thru the tubes of the shunt i had to get it removed. Or i would keep getting meninitas) After the shunt removal it terrified me! so i just sufferd with no relief. I have been on topomax ever since. And still have horrible pressures. I am monitored every 3 months with a neuro optomolgist. and neurologist. They all say now i need another shunt. But i am prone to meningitas. So noone will operate. Unless it is a life saving emergency. Even with all the treatments and weight loss. Nothing has changed. I cant help but think there is more too it. Esp since the chiari diagnosis.