Thursday, July 23, 2009

It's been a week

So I felt compelled to post. I'm not feeling any relief from MS symptoms yet, but it's been such a short period of time, plus I had a bad reaction to the Coumadin (warfarin). I got a 3 day rash that started on the 5th day post op. I started just scratching my hairline a little bit, and then I kept noticing that I was scratching everywhere on my torso. So I lifted my shirt up and voila! a rash! Well it's the third side effect listed on mayoclinic.com under "non-common" side effects. First the morphine, then the percocet, and now the warfarin. I'd make a horrible heroin addict. Well it's like I said in terms of my MS. I really don't feel anything yet. The neck and head pain are cut down big time, but there is still some pain there, but totally tolerable with tylenol or ibuprofen. Ibuprofen isn't a good one when you're on warfarin, so I tried Tylenol since it isn't an NSAID. It worked, but it doesn't last very long. I never liked that stuff for headaches either. I wish I could just take my 800mg Ibu's and get on with it, but the stents need your blood thin, so I didn't.

With all the pain I was feeling, and not being able to tolerate the good stuff, and then having to go off the warfarin because of the rash, I got a bit discouraged. I did because I had been reading other's good results with clarity of thought and heat tolerance that happened right out of the chute. But there's a catch there. Those who have had some relief in those areas have not had it for 8 years, nor did they have as high an EDSS score. BUT, they each had severe fatigue that affected them a great deal. My one friend, whom I'll call M since I didn't ask if I could post her name, is like the energizer bunny now; running AFTER work, changing tires, and is back to work. Now that speaks. She did have low EDSS, but that test is so misleading. Let's say you can run, jump, see well and walk a straight line. You'll have a low EDSS. However, if you need two naps a day, can't concentrate and can't keep your occupation because of crushing fatigue, then your MS is no less debilitating to your quality of life than someone with a high score that can't walk very far, but can still focus at work and doesn't require lots and lots of naps. That's the goofy thing about that measuring stick. There should be some sort of "life impact scale". But there's not, so I'll just speak to years with the disease. By the way, I mentioned that it was more than one. The other guy had the same thing, really bad fatigue and headaches and a pretty good case of depression. That all seems to be abated for them. That is wonderful news to me.

A friend who frequently calms my soul explained it to me in terms I'd like to share for what I'm hoping for. The thinking is that remyelination should be happening in the damaged areas once the reflux is corrected. Remember that the reflux 'fills your head with deoxyginated blood'. Your immune system is in there cleaning up from all the cellular death (these are called macrophages). This keeps the oligodendrocytes (your CNS repairmen) out. The clean up crew has been in there this whole time cleaning up the dead cells. The theory is when we are young, your repairmen can stay in front of damage that would result in an outward expression of symptoms. Once that scale is tipped, BLAMO, you have MS and it is a constant struggle with the immune system winning out over time. We also lose something called plasticity as we age, which is simply the ability to repair ourselves neurologically in a hurry, so it makes sense on that level that we don't start showing symptoms much earlier. So you need your oligos (repairmen) in there and you need the janitors out as they are a sign that damage is still occuring. After all, they aren't supposed to be there in the first place, but throw in a bunch of cell death, and here they come. Most people understand strokes, where your blood (oxygen to your brain) is COMPLETELY cut off by a clot on the feed in side. So you suffer brain cell death at a hugely accelerated rate compared to something like this. In this case, your brain is getting oxygen in, but once it's used up, it is refluxing back into your brain when it should be draining down your jugulars. So you still have oxygen in there obviously (hey, we are still alive!), but you also have hypoxia.

So it stands to reason that for someone who this has been working on for a while, may need more repairtime. And it might not all get repaired as most of us dread the thought of actual nerve death. Don't know if I have any of that, but it will take more time for me to see anything, at least that's the story I'm sticking too. There's another fellow whose had this done who had a screwed up bladder like mine. Those who know me know that my bladder has kind of taken over my life. Well his reports on that front have me green with envy. He spoke of sitting through a 2 and a half hour meeting the other day, where that would have simply been impossible before. I know exactly what he means. The only way that type of time passes for me without using the bathroom is to not drink for hours, then use a self catheter, and then hope for the best. I want me some of that.

And so I post because I'm antsy even though I have nothing to report but a greater understanding of what I could expect if all goes well. The seeing stars thing when I raise up from bending is still gone, but I think that was a direct, first tier symptom, of the reflux. Hopefully more to come, and more good to come.

2 comments:

  1. Lewis,
    I know it is hard to be patient, but hang in there! I think what you said above about it only being a week after 8 years is so true. I think if you have improvement in 3-6 months that would be considered a really positive outcome, though that probably seems like an eternity on this side of it, and especially because the future is unknown. But in a couple of months this first week will seem like a blip. Also remember how important it is to give your body time to heal and repair itself even from just the surgery alone - 6 weeks is usually the minimum for that. Don't overdo it, tempting as that is.
    Thinking of you all the time!!!
    Love,
    Claire

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  2. Lew,

    I can't even imagine what you must be going through. As I sat and read everything you wrote I felt compelled to think the worst, but then as I read your blog a second time I suddenly felt different. The more I thought about it I realized that as much damage that had been done to your body, it would take more time to heal. As in any surgery the time element is different for everyone, and I'm certain in your case it will be a little longer process, but the outcome will be well worth it. All the years that I've known you I've always looked at you as a very positive and compassionate person. I have prayed for you everyday and will continue to during your healing process. Hang in there friend and I'm sure that things will end in a positive way. God bless you and Brenda and Sarah. Love you guys.

    Cindi

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