Welcome back. If you are just tuning in, we have been lucky enough to interview some prominent MS bloggers who live with Primary Progressive Multiple Sclerosis. This week, Marc Stecker has joined us. Begin reading with Part One. Our interview continues below with Part Two.
Switching gears. There are no proven effective treatments for PPMS, could you give us a brief run-down of the treatments you have tried over the years? Have any of them proven effective for you over time?
I can give you a rundown of the treatments I've tried over the years, but it won't be brief. Let's see, there was Rebif, IV steroids, CellCept, Tysabri, Rituxan, plasmapheresis, intrathecal methotrexate, the liberation procedure, natural and homeopathic remedies, dietary changes, intense physical therapy, and even anti-evil eye ornaments. As a friend of mine once said, at this point I'd be willing to crawl up the ass of a fat man if there was even the slightest chance it might help beat this disease.
At the moment of my diagnosis, I swore that I would fight this thing with everything I had. My MS neurologist is known as one of the more aggressive doctors out there, and I'm fine with that. Even though there are risks involved with all the treatments I've tried, at least there was the possibility, however remote, of some upside return. I know with some certainty where doing nothing will lead, and it's not a pretty place. If I'm going to go down, it will be with all guns blazing, both fists bloodied, and a steady stream of curses leaving my lips.
Unfortunately, none of the therapies I've tried have done a lick in beating back my disease. Actually, a 10-day course of IV Solu-Medrol did provide some incredible but temporary improvements. It also led to my developing avascular necrosis, which is a rare side effect of steroid use, and is a condition in which the blood vessels that service the bones in the major joints die, taking down those joints with them. I have the condition in both shoulders and both hips, and it's resulted in my having to live with the equivalent of two broken hips. It's a progressive condition, and at times the pain it has caused me is literally beyond description. So, that 10-day course of steroids is the one treatment option I wish I hadn't tried.
As for the CCSVI liberation procedure, mine was a "successful failure." We discovered that I do have a significant blockage in my right internal jugular vein, but at present there is no way to get it open. Unlike most other people with vascular blockages, my blockage is caused by a muscle external to the vein pinching it closed. Ballooning or even stenting will not clear up this blockage, and it seems that my only option may be traditional open neck surgery. Several of the CCSVI experts have weighed in, though, saying that although my blockage is rather severe, it's not causing the turbulent black flow of blood back into the CNS that is the hallmark of CCSVI. That's one of the big misunderstandings about the CCSVI hypothesis. Itʼs not the actual blockages that are the problem, but the disruption in blood flow caused by those blockages. Not every blockage results in the severe reversal in blood flow that the CCSVI theory proposes is behind the damage done to the CNS.

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