Sunday, May 23, 2010


Well I haven't posted in a while, and this one isn't going to be that long either. I feel OK is the best I can say. My demeanor, my dizziness, my bladder, bowels, all the functional stuff still feels unchanged. My legs, however, don't feel unchanged. They feel weaker. Now it's only slight and I'm still not using my cane yet, but I know for a fact that I can't walk as far as I could even 3 months ago. This sucks bad, but I still know I did SOMETHING to get in the way of the slide I was on. I just know that things are getting slowly worse in my legs now. It's been a while that I've sat on this and now I have to say it out loud. Not what any of us want to hear, but reality is reality. I'm still working and living and all that good stuff. It's just things that I did easier for a while after the surgery are becoming harder again. The heat is starting to really bother me again too.

I hope to post more after I've really pontificated on it and done some self run experiment type stuff, but I haven't posted in a while and this is why. It's not a virus or a 'bad spell', it's just that my legs are getting slowly weaker and I promised to be honest, so here I am doing that. The things that make it obvious to me are things that I've not experienced yet. I was very hesitant to post about this until there was something new happening, not just waxing and waning of existing stuff. Well I can't put my sock on my left foot by pulling my left leg up anymore. I have to pull it up with my left hand and wedge my heel on the bedrail or on the chair I'm sitting in. I can't hold it up even for 2 seconds to throw a footie on. And I have to consciously watch lifting my left foot high since I've been catching it on the flat ground, denoting the start of foot drop; which I've never had. Also if I'm sitting and I raise my toe off the ground and then push on my knee, I have some pretty hardcore clonus. All new stuff.

It's not like I'm sinking into the pit of despair or anything. As I said before, I still feel better than I did pre-surgery overall for sure. It's just that my legs are getting weaker and that is decidedly not a good thing. I don't have my limp back until I'm very fatigued and that so I know I'm not back to where I was pre-surgery. My one year checkup is coming up in mid-July and I hope to God Dake finds something. I don't want the 'all clear'. I know he can't do something surgically for me right now, but just knowing that there's potentially a reason for this would be great. But as we've talked about many times before, the progressive camp is/has been/was/always will be, sucking hind tit to relapsing and remitting. So I now have to start working on letting myself feel joy when other's not so afflicted get great results from this instead of turning green with envy. My mind is a bit scattered right now, so I'm going to cut this short. As I said, I'll post again soon when I've got this all sorted out.


  1. Hang in there Lew. I totally appreciate your honesty. I am thinking of you! John and I are still waiting for Dr. S to start back up, John is the first in line when this does happen!

  2. I responded to your comment on my blog. Here it is for you:
    Lew, I'm sorry you are not doing as well as you were hoping. It's hard to get our hopes up, then be disappointed.
    I am still RR and Neville did see reflux in my azygos, so I'm holding out hope that there is something more to be done. What is my alternative?
    Thank you for bravely continuing to share your experience with others. We all need to be reminded, whether we like it or not, that this treatment may not be the be all, end all. I hope that Dake has an explanation for you! Progression does not have to be an intevitability. Zamboni did not mention it!
    Stay strong,

  3. While you are still walking I would look into Campath.

    If you like I will send you the NEJM study and the 4 year outcomes.


  4. I am hopeful you have some restoninis that will be addressed at your check up. I am saying an extra large prayer for you.

  5. So sorry Lew. As someone else mentioned, I hate to wish something bad on you but I hope you end up finding it's restenosis or something that can be fixed.

  6. Loobie, Well I thought your note was really gonna bite the big one, yet it sounds as if maybe u have stenosed in another area. An area that did ok with the small amount of venous blood, but now that the dams have been lifted maybe that spot couldn't take it and said Uncle. It makes even more sense as how u r getting symptoms that u never had before. Not only has the FAT lady not sung, she is thin now. Please let us know what Dake finds. You will be ok. kc

  7. I'm very sorry to hear of your deterioration. If it's any consolation I too have deteriorated and suffered a relapse from week 20 of a very low blood pressure pregnancy. I'm going to try to visit Dr Simka in the fall to rule out restenosis or other venous issues.

  8. Thanks everyone for all your support and comments. I'm still working a full day and doing all that. It's just taking up most of my energy instead of having some left over for after work (read: living my damn life). It sucks but, as always, it could be worse.

    I'll most definitely make a post when I'm out there and let you all know what we find. Hopefully a big pinched area!! Progressive MS is for the birds.

  9. Sending good thoughts your way.

  10. Hang in there buddy. We ll see together what s wrong when Dake check on you. Hopefuly he ll find something. I mean, you have had improvements post op so...
    I read above about campath. I feel obligated to say that it didnt do shit for me. And i have had a lot of it...
    Your decision of course.
    Please, continue to inform us.

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  12. Thinking about you Lew. Thank you for being so supportive to me during my relapse when you're dealing with all this.


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