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Old 03-21-2009, 08:57 AM #1
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Default Convincing yourself it's not an attack

Anyone ever think they went through an attack, in hindsight, without doing anything about it? Say convincing yourself you weren't really having one because you didn't want to do the roids? I know if it were a serious enough one that wouldn't happen but with my ON I think they can be subtle.

I haven't done that (I don't think) but I'm a little worried that I might. My distaste for the IVSM is that strong.
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Old 03-21-2009, 03:41 PM #2
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Raises my hand...same here. When I was first diagnosed the ON was severe and sudden and I didn't know anything about IVSM, so I did as I was told. They forgot to tell me about the side effects!

I didn't like being up for 80+ hours, the horrible rage that would sweep over me without warning for no good reason, the stomach thing, etc.

Three months later, another round for another relapse. I made it through two of three infusions and that was it.

Three months later...oral prednisone.

After that if it wasn't a severe relapse I just called and let the doc know what was going on and refused the steroids until the month before I went on Tysabri when the new neuro convinced me that I needed another course of steroids and I did a three day high dose run of oral pred again.

That was in May 2007 and I am hoping I never have to do them again!
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Old 03-21-2009, 06:44 PM #3
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As long as the Roids were working I would put up with the Side effects, but when they stopped working for me, I refused them from then on.

The ON will get better on it's own, Keith, with or without Roids. It does nothing to cure the ON.....it just, sometimes shortens the attack. Sometimes it's the only thing a Doc has to offer us.

I hope you are better soon..
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Old 03-22-2009, 06:38 AM #4
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I am definitely guilty of that! Everytime I have an attack I say it isn't one and will get better. Oh...that is what I have been saying to myself for the past 2 weeks. You think I should call the doc?

Good luck to you either way. I hate the IV as well. I get to the point I can't even stand the smell of the alcohol wipes.

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Old 03-22-2009, 07:41 AM #5
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***Raises hand****

Me! I HATE HATE HATE Roids, and they hate me! I will not take them unless I am really severe, and I am risking something precious like my eye sight. I will take them for ON, but wont take them for other flairs, like dragging a leg, or tri gem stuff. I just sort of suck it up, and ride it out. My MS center says that if you have sx for longer than 24 hours straight, they have a 2 week window to start you on steriods to shorten the length of the attack. After 2 weeks of waiting the recovery rate is the same as those who refused steroids. The steroids help make the attack shorter, which is supposed to preserve function and stability, and hope that it prevents a permenant sx. I just hate how I am when on roids, and it takes me so much longer to recover from the roid than it does to recover from the flair. I hate this disease!
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Old 03-22-2009, 08:54 AM #6
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Sorry if I wasn't more clear Sally, I really am not having one right now. Really. Truly. lol I'm really not, I just got to thinking about it and was curious if anyone else hated the roids that much.
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Old 03-22-2009, 10:38 AM #7
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Quote:
Originally Posted by KAOheim View Post
Sorry if I wasn't more clear Sally, I really am not having one right now. Really. Truly. lol I'm really not, I just got to thinking about it and was curious if anyone else hated the roids that much.
Well, alright then..
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Old 03-22-2009, 10:40 AM #8
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I told my neuro -- no steriods unless it is a severe attack. I have only had IVSM one time for 5 days and I also hated it. He just shrugged his shoulders and said "okay." but I did promise to immediately call if I ever experienced ON. I had a flair last fall and did not realize it was a flair until I started to feel better.

Last edited by barb02; 03-22-2009 at 11:15 AM. Reason: typo
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Old 03-22-2009, 11:03 AM #9
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I must just live in denial.............. I'll argue with myself over whether it's a pseudo flair or a real flair. Then, by the time I agree that it's an actual flair it's too late to begin the roids. I think I know what I'm doing!!
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