Life with MS & EDS

August 4, 2010

CCSVI – A Few Days After Angioplasty

Filed under: Uncategorized — by mseds @ 8:34 pm
Tags: , , , , ,

I had intended to try to write every day, but have been quite busy and have had less time at my laptop than I expected.  Day 2 after angioplasty brought a trip to a new children’s museum with the family.  I walked around all afternoon, making myself sit down every now and again so that I wouldn’t push it.  I would have felt even more fantastic if it wasn’t the day after a Rebif shot.  I’ve decided that my Rebif side effects are even more annoying now that I know how good I can feel.  Rebif side effect on an already worn-out me were annoying, but they are far, far more annoying on the new me!  Although I take Aleve before my shot, when I stay up too long after my shot, I get the chills, my teeth chatter, and I feel awful.  This was the case Saturday night.  I’m so used to my fatigue sending me to bed early and have basically forgotten what the signs of “normal” tired feel like.  I did my shot at my regular time, but was so awake that I stayed up until 11:30.  Then I was suddenly nauseous (that was a new thing) and had the chills!  Whoops.  Note to self: ensure to go to bed within 1.5 hours of doing the Rebif shot.  I was nauseous again in the morning in addition to my normal fever of around 100 degrees and feeling achy and worn out.  Post-angioplasty is the first time I’ve ever had nausea as a side effect.  Lovely.

Okay, enough venting about Rebif and back to how great I feel otherwise.  Since angioplasty, I’ve had much more energy, my hand and arm strength have improved, my appetite has significantly decreased, and my sense of smell is far better than it’s been in years (yes, I know, that’s strange!)  Don’t get me wrong, I still get tired.  I was yawning away this afternoon.  I was hoping that my incessant yawning would go away after angioplasty, but it hasn’t.  It’s decreased, especially the first couple of days, but it’s apparently not gone.  I’m trying not to read anything into that!

One of the best things is that my stress is gone.  I’ve been feeling some level of stress since I first found out about CCSVI.  First I couldn’t wait to find out what my veins looked like.  This past April I finally got that answer.  Then I was stressed about finding someone to fix them.  Now that they are fixed, the stress is gone!  Sure, I’m a little worried about when/if they are going to close again, but for now I am really enjoying my victory.

I was quite interested to see how my neurologists were going to react when I told them I had angioplasty.  I know neither of them is on board.  Today was my six-month check up with Dr. Generalist (my local neuro.)  As I was sitting down in his office he asked me how I was feeling and if anything was new.  I opened with, “I had my veins fixed,” and he looked at me curiously.  I went on to tell him the story and about how great I was feeling.  Much to my surprise, he didn’t have a negative reaction.  He actually seemed interested.  I was his first patient who was persistent enough to not only do the research, but to do something about it and he was impressed by that.  I don’t think he’ll be sending patients off for angioplasty any time soon, but I think he’s going to be open minded and follow the research and how I’m doing.  I can live with that.

He also gave me a tip about managing Rebif side effects.  I’ve only been taking 1 Aleve (220mg) before a shot.  He said to try 2 Aleve one hour before a shot and to take another Aleve if I’m up in the middle of the night (which of course I am because I drink so much water before a shot that I have to pee by 4 a.m.!)  I’ll let you know if the extra Aleve helps at all.  Since he seemed to be in an open-minded mood, I decided to push it and asked about LDN.  I got the same response I got from Dr. Specialist — some seem to do well on it, but there’s no scientific proof, so I’m not on board with prescribing it.  Oh well.  One battle at a time.

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2 Comments »

  1. so happy to hear about the changes!!!!

    Comment by posey — August 4, 2010 @ 9:15 pm

  2. Come on. Your doc after seeing your improvement, wouldn’t reccomend this procedure to all his patients with MS? But he will prescribe interferons. ARE YOU KIDDING ME?
    I have SPMS. Will not subject my body to interferons. Take that..I did it once…felt horrible for hours after..fever..achy.
    Dis this work for you or not?

    Comment by jamie — August 13, 2010 @ 7:53 pm


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