[TMIC] An update

Sandra Melville (luthyen(AT)erols.com)
Fri, 21 May 1999 19:46:28 -0400

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!