Wednesday, September 9, 2009

Last post before "going back to Cali"

I take off Monday morning at 6:00am for my check up/round 2. I have levelled off improving and have even felt some worsening of things like leg strength in the last week. I'm not sure if it has worsened or if my perception has just changed since there was some improvement so it just feels worse from that frame of reference. Not sure, but I kind of feel like I did, in that regard anyway, like I did pre-surgery. Looking back at the last week, however, I don't feel like anything else has slipped except maybe that and my attitude. So I'm in a holding pattern in terms of evaluation of what this is or is not doing. There is another fellow I communicate with who is feeling more or less the same way. I can't say that this did nothing. I was sliding downhill before I recieved this as I've said ad nauseum on here. I'm not right now and that's cool. However, reading all of the people who have had definite improvement leaves me wanting that's for sure.

The drug I was on before this is called Tysabri. Google it if you're interested in what it's all about. I hadn't had an infusion in like 6 weeks prior to my procedure. Well the woman who always points me in the right direction when I'm crying "WTF?" brought to my attention a number of reports of a "rebound effect" after quitting this therapy. I about shit when I saw all the google hits when I put in 'rebound effect of Tysabri", or something like that. You see that drug was pulled off the market shortly after it's release due to some deaths. Well this rebound was reported clinically (lesion load) and anecdotally on a number of the things I read. It's not surprising that Biogen's take (the manufacturer of the drug) is that there is no evidence of this effect. However, there are more screeds describing it as genuine, so I'm going with those!

At any rate (I need to come up with a new paragraph segue!), I go back out and my Dr. will be freshly back from attending the CCSVI conference in Bologna, Italy. It sounds like that conference was just electrically charged from the reports I've read from our resident superwoman on ThisIsMS who actually went to the freaking conference! Once again, hats off to you Joan, your efforts and what they mean to people like me leave me speechless; and that 'ain't easy! So my hope is that all the collaboration and information sharing that went on there has Dr. Dake loaded for bear and itching to crack a hard case (me!). I must always keep in mind that this is all new to the doctors as well as to us. There's no "what to expect when you're expecting" book to deal with this.........yet (possible book idea Jon!). So everything is scary because you just don't know what to expect. It's a weird dynamic, but when you hear someone else say that they are having issues as well it's kind of comforting as you don't feel like you're such an anamoly; like maybe a tweak here or a tweak there will do it. So with his gained knowledge from sharing with other docs around the globe researching this, I hope he sees something and says "there it is! that's what I'm looking for!", and he would if he saw it. The guy is the energizer freakin' bunny in the OR. Infectiously enthusiastic. As I write more thoughts are flooding in, but I think I'll put the monkeys back in their cages as everything at this point is just speculation on my part.

My biggest fear is that he reviews my scans and says "everything looks good", but I doubt that will happen. I got my glimpse of a few days of functioning like I'd not done in years. I want that back, but more importantly, I want it to happen so those of us with more advanced MS can actually have a treatment option. My buddy Larry, my buddy Robbie and all the thousands of people who have this that are at the point of just watching life go by from a wheelchair, they've never had an option. Hell, people only advanced as far as me don't have many options that show any degree of certainty and I still work full time. I just need to stop because sometimes I ramble and it just looks to me like brain puke. So I'll update from California as I'm recovering in my good friend's incredibly comfortable house and hopefully I'll have some actual news and not just all my thoughts and hopes.

1 comment:

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