-----Original Message-----
From: Sandra Melville <luthyen(AT)erols.com>
To: tmic-list(AT)eskimo.com <tmic-list(AT)eskimo.com>
Date: Saturday, 22 May 1999 6:37:pm
Subject: [TMIC] An update
>Dear friends,
>I just thought I would update you on what has been going on with me and
also
>inquire if any of you have had similar episodes. You may remember that one
>year ago I was hospitalized for about a month with severe orthostatic
>hypotension (I stood up, BP went away,HR went up). I had the mega work up
>at that time and found no bad cause for this. We thought it might be the
>cytoxin that I had taken, and so we stopped that. However, a little over a
>year to the day, and shortly after I had decreased my predisone dose I
again
>developed the severe orthostasis and had to be hospitalized, though only
for
>a week this time. I am home now, and my BP is better although I am now
>taking seven more pills, five times a day. :p
>although I have read the postings, I haven't had the energy to respond
until
>now.
>
>While in the hospital, I received three grams of Solumedrol IV over four
>days, and the good news is I found myself much stronger and more agile than
>I had been in some time. (Didn't help the BP though). Weakness had crept up
>on me, and while the IVIG had improved the situation each time, I now could
>see how much better my function could be. So, we're back to square one
with
>the steroid dependence. We're going to try IVIG more frequently and see
>what effects that has; and perhaps some immunosupression with methotrexate
>or immuran. It seems that the sensory and motor changes in my hands and
>arms will be my baseline, as they did not change very much with the
steroid.
>
>Tomorrow it is two years since I was hospitalized and diagnosed with TM.
It
>has been one heck of her a ride.BUT the flowers and trees are blooming, and
>I'm home to see them, it's baseball season and I can cheer for my kids, so
I
>really have nothing to complain about :)
>
>Sam, who loves juggling the schedule to get two boys two different places
at
>the same time!
>