Wednesday, November 4, 2009

Holding pattern and going back to Cali. part tres

Here we are at basically 4 months since this odyssey all started. Boy does it seem like longer. That is a very good thing as when you are in the throes of progression, time just melts away and you end up looking back and saying "wha' happened?". So I'm still pretty much in a holding pattern as far as my own perception goes. I had some transient leg weakness in the last couple of weeks, but that has abated. I have started exercising and going to physical therapy, so it could be that as much as anything. But I ain't gettin' worse! As I've said many, many times, that's huge, ginormous, stupendous and every other positive adjective you want to throw at it. I'm starting to get used to where I'm at and it's a very, very good feeling to have limits that aren't always in major flux. I know what is going to make me hurt and then the decision about whether to do it is a much more personal choice. When you don't know where you're at, you just are always doing too much, getting too exhausted, pissing your pants, all kinds of shite. It's so nice to have an expected outcome to what you choose to do. It's not only disconcerting when it's the other way, but it's also very deflating to your ego. It's hard to explain, but all you MS'ers out there reading this know exactly what I'm talking about. I never thought in a million years that at the age of 43 I would have to be 'rationing' my effort. But now I can pretty much get done what I want to within reason since I can just spread it out and pace myself. When you don't know where your limits are, you are constantly not getting anything near the amount of stuff you want to get done as you go to exhaustion all the time and have to keep putting things out. Now I'm not talking about raking my entire yards' worth of leaves or things like that. But rather doing things at work, doing housework, that kind of stuff. It's so nice to know what to expect. You know it's about the time where you're going to trip your trigger. You just stop for a bit, have a cold drink and a break, and start again. When you go too far, many times you won't get the opportunity until the next day.

So I'm going back to California for the third time. Check up on round 2 of the procedure. Here's where it gets good. If something has to be done again, I can do it just up I-75! Only four short hours away from here by car is where one of the docs who is getting into this is doing his thing. You can check out the info. at There is a doctor up there who is doing a type of MRI that I may have alluded to before called SWI or susceptibility weighted imaging. Don't know what the hell that mouthful means, but he can actually see the areas where there is increased iron deposition from years of reflux of de-oxygenated blood. On a whim I decided to shoot them an email off the generic email on their site to see if they could do my check ups. Well they called me the same day and I'm going to go up there when I get back and they are going to do the MRI with SWI. That's very intriguing to me as I think this doctor (Dr. Haacke) may be really on to something with the whole iron thing. Now the next question is can we do anything about the damage? Either the already inflicted damage done, or the flip side of if we remove it will things heal? Those are burning questions for me. As I've stated before, being secondary progressive means my disease is no longer an inflammatory process, but rather a degenerative one. So at the age of 43 (your nervous system really slows it's ability to heal after about 30-35 I hear) I'd like to get anything that could potentially damage my brain further the hell out of there. Also I'd like to give it a chance to heal to the best of it's ability, and I don't know if that's possible with all those macrophages in there. I probably got that term wrong, but there are things that do damage and things that clean up the mess, and they are not in there at the same time. I think the bad guys are the macrophages, so here we are.

So going forward, a drive to Michigan for the day is a hell of a lot less daunting than flying to California from Ohio. Plus it potentially opens up the door for people on this side of the Mississippi since Dr. Haacke is teaming up with an interventional radiologist at Wayne State U. I don't know when or if they will be doing the interventions like they are at Stanford, but I do know that they want to get a look at my noggin since I've actually had the procedure done. I'm pretty jazzed about the prospect of furthering Dr. Haacke's understanding of what he's looking at, as well as being able to get a picture now to compare to a picture later and see if things are headed in the right direction. Right now they're only doing the imaging to back up the theory of "everyone with MS has this" I believe and it will maybe get them funding to proceed with a trial and get published results. Well as you guys know, my shoulder took a big hit and I spent literally all day doing computer stuff at work and right now it is just jonesing from typing all day so this will be a short post. I leave on Tuesday of next week and I'm sure I'll update from out there like I usually do. So everyone send good juju that my last round took really well like the first one did and all I go out there for is to get in the tube and talk to the doctor. That would be very cool as I'm going by myself this time. Now that is a big change from 4 months ago when I had to have my mom push me in a chair and use my cane when I had to walk. That's a big change. Like I've always said, it's like kids and growing I think. Others notice more of a difference in me than I do in myself and it's all good. That doesn't suck.


  1. Hi Lew,
    I have been following you and all the other threads on TIMS for at least a month now. It has been a wealth of information and an amazing inspiration to me, thank you. I missed Dr. Dake's call last week and am hoping to hear from him soon!:) Be well and know that someone in Florida will be praying for you during your time in Cali.

  2. Hey Lew, good luck at Stanford! Looking forward to results from Dr. Haacke and pray that things are going and continue moving in the right direction.

  3. Wishing you the best and praying that things just keep getting better. Please have a safe trip and let me know how things are going for you. Greg and I speak of you often and I look every day for your blog. Be well my friend and best of luck!!!!!!!!


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