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Old 02-03-2012, 12:08 PM
Stellatum Stellatum is offline
Senior Member
 
Join Date: Feb 2010
Posts: 1,215
10 yr Member
Stellatum Stellatum is offline
Senior Member
 
Join Date: Feb 2010
Posts: 1,215
10 yr Member
Default need suggestions for upcoming neuro appointment

At the end of December, I got very weak. My neurologist and I decided I should have a course of IVIg the first week of January, and that I would see him in mid-February. At that time, if my symptoms were returning, we would schedule a one-day booster infusion of IVIg. The idea was that if we treated the symptoms when they first started coming back, instead of waiting until I was really weak, that one day would be enough. I could then have one day every six weeks and stay strong.

Unfortunately, the January course of IVIg didn't give me six weeks of strength like the last one did. The reason is probably that I only had three days, instead of five like last time. So this time I was strong for about two weeks, and then got weak again (though not as weak as I was before the infusions).

So, when I see the doctor soon, I will discuss with him what to do now. I will ask him what he thinks I should do, of course, but he's open to suggestions. Here are some ideas:

--I could wait until I get really weak again and have a five-day course of IVIg, in the hopes that it will make me strong for six weeks again, and then I could get a one-day booster when symptoms start to return;

--I could ask for a full five-day course right away, even though I'm not weak enough according to his usual standards to justify it, in the hopes that this would stabilize me, and then I could get a one-day booster in six weeks;

--I could ask for a three-day course right away, in the hopes that since I'm only moderately weak, it would be enough this time.

Or? Does anyone else have any ideas for strategies I might suggest we try? I've been on Imuran for about ten months, and my doctor still thinks that it's going to start working any day now, so he tends to think of IVIg in terms of tiding me over until the Imuran kicks in. I'm not ruling that out, but I'm less optimistic.

Thanks.

Abby
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