Thursday, August 20, 2009

Weekly update

And another week in the bag. Pretty benign week MS wise. Nothing really has changed; which as I explained before is a great thing since I'm not on any drug right now. So my update from that is that I feel the same. Not better and not worse. While that is a good thing, the slightly subtle uptick in how I was feeling in certain areas is not there right now either. The one thing that keeps happening that is very heartening is that the people from Italy who've had this done for a while now are speaking up and it's all good news. This week we got a heart surgeon with MS who is singing the praises of this procedure. One thing to note is that it seems like almost everyone, whether they had Dake's stents or Zamboni's balloons, needs maintenance. They need periodic check ups and "tune ups". I'll take that anyday if I'm seeing positive change. That is really all I have to say on the MS front this week as it really has just been a "normal" week. Hoping for the clouds to part and trumpets to blare, but I'll take the normal over the decline any day of the year. There is one anecdote I'd like to share.

One of the first people who had this done was discussing how much shoulder problems she was having, as we all did, and I was just kind of paying attention because my neck and head and shoulder pain went away pretty quickly. Well not so fast! This weekend I started hurting again, but differently this time, and I looked at my shoulder and it looked really odd. I could see my shouler blade sticking up past my shoulder; from the front! Well long story short, I am having muscle spasms in that area and it's actually holding my shoulder joint out of socket. Not dislocated, but out of socket from the spasmed muscles pulling on it. A massage therapist could get it to go back in, but once I would move that arm, out it went again. You could actually see it moving in the mirror. Pretty trippy. Anyway, it's not keeping me from work, but it does hurt pretty bad when I move a certain way. So I will keep stretching and getting massages (torture sessions) until it goes back in. I have my follow up appt. scheduled for September 15th. I'm sure I'll have a lot to say after that. I also have a heavy heart this week as one of our original pioneers that had this surgery passed away this week. She had a hemmoraghic stroke and passed away. It was not related to the surgery, but it still makes me very sad as she was an incredibly positive and supportive force in this effort to get out the word about this procedure. She will be sorely missed and my heart goes out to her family.

So I hope I have more to post next week. This is my 'blah' post with nothing much of substance, but I have been holding myself to once a week and I plan to keep that up.


  1. "the slightly subtle uptick in how I was feeling in certain areas is not there right now either"

    Did you lose ground with what you felt were improvements?

  2. No I don't believe so. I feel pretty stable but don't have improvements to talk about....except the fact that I'm not progressing, which of course also be natural disease course. The only thing bothering me is now that I've done three and half weeks of the 5 weeks post surgery with a screwed up shoulder and it's starting to piss me off! Other than that I'm kind of holding my breath and hoping like mad that this next round will really do me up. I have a feeling, and have no rational thought behind it, that maybe my INR level was normal for so long when I was off the Coumadin, that maybe I need "cleaned out". Who is this if you don't mind me asking?


  3. Double M from thisisms. I check your blog weekly to see how you are doing. Have a call in for my husband to Stanford. Missed the one call back from Alex. Trying to pull myself up by the boot straps(again)to get started on this journey, and hope for improvements for the guy.

  4. So sorry about the shoulder issues, Lew. Ouch! Hang in the inflammation subsides, so shall the spasms. Keep up with the massage and muscle relaxants and keep posting. This is important for folks to're in our prayers.
    Momma J

  5. Hi Lew, I'm very new to this as you in fact were my inspiration to do this! girlfriend forwarded me your site as she was frustrated that others seemed oblivious to what I actually go through. But for the problems with urination that you have and the severe vision problems I have, we are very similiar in our symptoms.

    I cannont express how lucky you are to have a wonderful woman like your wife. Most of us can only wish for such compassion. But I have three great kids who make up for it......I'm following your surgery exploits very carefully. I've been on Tysabri for 9 sessions and like every other treatment it's designed to prevent progression. How the hell do you measure success that way? Your treatment seems to show results. That's what I'm interested in.....write back if you can.....


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