Wednesday, June 2, 2010

Some clarification and a forum post I just made

Based on feedback from my last post, I wanted to expound more, and I replied to a posting on the forum It has a lot of educated about CCSVI lingo, but most of it is easy to follow. I'm copying and pasting it on here basically because I'm lazy! So here it is and it should dispel any thoughts of me sitting around crying in my beer! This is a response to other forum members being concerned about what is happening and also having fresh doubts about the merits of this procedure. Here it is:

Hey I'm flattered as hell! Most of the time when folks are talking about me it isn't so flattering! lol. At any rate, keep in mind that I'm still walking WAY better than I was before the procedure. Way better. No cane and no limp until I walk a good distance. Don't forget I needed to be wheeled through the airport the first time out. All these comparisons are from my new baseline which is significantly higher than it was pre-procedure.

But the stuff I posted about is real. The new clonus, the dragging the throw rugs around and tripping over 1/4" high thresholds, plus leg weakness on the left side; mostly in the hamstring area. It's there for real but I have to qualify it a little better at least in terms of my interpretation of it.

Since I'm known as analogy boy, let's use the floods in Nashville as a reference. Let's say your house was underwater for days and days (active MS). If it stayed underwater it would be considered to be 'under attack'. But let's say the flood waters recede. Your house is still standing and the source of the active damage is gone. Is your drywall in good shape just because the water went back? Are the water stains and water saturation and actual damage going to go away? No, it's now waterlogged even though there is no more active damage. And it's deteriorated and will not fix itself just because you took the damaging force away. And it never will. IT NEEDS REPAIRED. That's my CNS. I don't have inflammatory MS (RR). I have SP, so there's damage that doesn't go away when the inflammation is removed.

So I'm now aging with weak drywall. It's going to deteriorate naturally much faster than good drywall would have. So I suspect there's some of that going on. To be cliche, it is what it is. My nerves that are damaged are aging more quickly than healthy nerves age. So as many of us suspected, if you have an actual damaged CNS, and not a CNS affected by inflammation, you're going to need Step 2; repair. Is it stem cells? Is it something else? No one can say yet as this is, as Joan has pointed out, new stuff; we were guineas of the highest order.

My spirits are good. I'm pissed that I didn't get the results of people like Rhonda and Mel, but I don't begrudge them one bit. The flood waters were at their doors, but still behind the sandbags. So when the waters receded, the symptoms did too. THAT IS AWESOME NEWS. Why? Because maybe if CCSVI gets researched to death, it may become the first thing you do upon diagnosis. Then maybe nobody has to progress to progressive and deal with the damage that has already happened to me and all of us SP'rs and PP'rs.

I am absolutely grateful to have been a part of this. I am now in the camp of "I've done everything physically possible to beat this disease", it's just that everything possible still isn't a cure and a fix.

BTW, I was on Tysabri and progressed the WHOLE TIME, so there will be no talk of me going back on that crap. It didn't work; period. Hell, they even tell you it won't work when you're progressive so this line from LeAnne:

"Lew stopped Tysabri medication after he had the CCSVI operation and my feeling is that maybe we need to stay on the meds until we know the true impact of CCSVI. It may be a case of CCSVI and meds together to beat this disease."

isn't really anything I'd even remotely consider because why pump myself full of high priced poison (my opinion) if it isn't working? What's the definition of insanity? Doing the same thing over and over and expecting different results. It simply didn't work and I'm not going to stay on drugs that aren't working. It doesn't even make a modicum of sense. If there was even an inkling that it worked, I'd never have stopped it. Read the Tysabri book. The big marker for using Tysabri is to keep you from going progressive or getting past EDSS 3.5. I was a 4.5, so I shouldn't even have been on it in the first place. Maybe it helps RR patients, but it didn't do anything for me except drain my wallet.

The visit to Dake is going to be telling. If he says my jugs still look like McDonald's straws, it won't be what I want to hear, but it will reinforce my theory about aging with damaged nerves. You have to remember, my most recent active symptom when I was sliding was all things left leg, so it's not surprising in the confines of my theory that it would be the first thing affected. However, let's hope he finds some new area of stenosis, or has better insight into the azygous. We DID check my azygous very robustly last time and it was flowing well. Maybe it's the membrane thing that Simka sees. I don't know and neither does anybody else really. If there's flow, it's working right is all I can say. I suspect my theory is right.

And remember one thing. MS sucks and it makes your life hard. BUT it is still simply that; life. This is my life. Michael Phelps' life is his life. No one said all our lives are the same or be at the same level of suckiness. I have this to deal with. Life is harder, but I'm still alive and still searching for what makes me happy and content just like everybody else, healthy or not. How can I "woe is me" this? We didn't know if it would be successful or not. So we were just hoping it would work. That's it, that's really it. If I start deteriorating more rapidly again, guess what? I start all this madness over and move on to the next thing if there is one while I'm still around and kickin'. That is doing all I can and we all need to. The more you learn, the more you realize that you shouldn't do anything your dr. says unless you agree with it also. That's what comes with having a disease with such poorly understood etiology. They don't know shit about this disease, only what they are supposed to prescribe you. Call that an opinion or a fact, but it's obvious no one knows enough about this disease to be super confident recommending ANYTHING.


  1. I salute you for having tried the procedure.

  2. wow what a great analogy. I have not been diagnosed with MS but follow these sites avidly.
    You seem to be a positive person who handles the stress of this illness with grace and humility. Good Luck.

  3. Congratulations on getting liberated! I hope I will be joining you and others soon.

    Your analogy is a good one. One thing to remember is that the nervous system takes longer to repair itself than any other system in the body - 7 years for complete healing, if I recall. I heard a neurologist say once that when we talk about healing flesh and bones, we talk in terms of days and weeks. When we talk about healing the nervous system, we talk in terms of months and years. So give it time and keep the faith. Great diet, exercise, Vitamin B-12 (very healing to the nervous system.) If your veins don't restenose I would bet you will be considerably better in the next couple of years.

  4. I thank you for being so upfront with everything, honesty really is the best policy.

    I am recently diagnosed and am dealing with the beginnings of this disease and how much it sucks. Your posts makes me want to find a doctor soon - especially if your theory is correct. At the same time the market is so saturated with many people who need this procedure and I know I am back far on the list. What a tough place to be.

    I have heard the nerves take a long time to heal as well - I hope for you that this is true and you will become truly liberated.

  5. Hi from UK I too have the same disease I hate it so so much.


I've figured out how to get everyone to be able to post on here.