Re: tmic-digest Digest V98 #9

Ellen Hertz (eshertz(AT)access.digex.net)
Fri, 23 Jan 1998 19:33:58 -0500

At 11:38 PM 1/22/98 EST, SFrascella wrote:
>Hello everyone. My name is Susan. I "came down" with TM one year and seven
>months ago (but who's counting?) on Mother's Day, 1996; I was 52. I had a
>terrible flu the week prior. Like many of you, I spent a week in hospital
and
>had every test under the sun ~ none of which told me as much as I have
learned
>from reading these messages. (one example of many ~ reference to the "girdle"
>which has frightened and perplexed me, but which I didn't even mention to my
>dr. because I didn't know how to describe it!) I was put on a heavy-duty
>course of prednisone. I was paralyzed about two months and made what was
>touted as an "amazing" recovery. This means I could walk without assistance
>by October and had recovered about 60% sensation ~ my %, of course!
>
>I have had a tremendous fear of re-lapse. I know that it not an unusual fear
>at all, and one that many of you share; for me, a lot of the fear is based on
>my need to earn a living. I am a single woman; I raised my four (terrific!)
>daughters on my own and was only just beginning to feel some financial "hope"
>when I became ill. I returned to work while still in the wheelchair (too
>soon) and actually lost very little time. To add to the drama, I lost my job
>last May (a year after TM) and have been slowly rebuilding my professional
>life as a consultant ~ only within the last two months starting to feel like
>it's going to be okay ~ if I keep my nose to the grindstone! (It's great to
>work at home, definitely less stress overall)
>
>Long story short (I am long-winded, huh?) last Friday afternoon, my left foot
>(so-called "good" side) and lower leg went numb. By 8 that night, partial
>numbness on the left side up to buttocks and almost completely numb on entire
>right side up to rib cage. However, I did not lose my strength and can stand
>up, walk (so to speak!) with a cane. Doc put me on an anit-viral and a six
>day course of methyl-prednisone, which I just completed. Improvement, yes,
>but not that much. He now wants me to take prednisone itself for another two
>weeks (about 60mgs/day), which I was to start today. This is where I would
>like your input: I have decided not to take the pred. though I haven't
>informed my dr. of this ~ he'll flip, I'm sure. But prednesone makes me
really
>nuts: I can't sleep, I can't think straight, I get manic/jittery and I can't
>focus on my work! I have an appointment tomorrow with dr. of oriental
>medicine. I believe she uses several approaches: acupuncture, herbs, some
>"vibration" machines, muscle testing, etc. It's obvious that the medical
>community knows very little about the whys and wherefores of TM; therefore my
>confidence in standard treatment is low, though I'm not prone to alternative
>approaches.
>
>I am open to response regarding "not following doctor's orders" ~ and
>certainly invite anyone who has had a re-lapse to share their story with me.
>I appreciate having a forum like this to express myself ~ I won't take up
this
>much room in the future!
>
>
Susan,

I have taken prednisone for over thirty years. I am on 40 mg every other
day. It is every other day to keep my adrenal glands working because it is
pretty much indefinitely in my case. I have some osteoporosis and some
heartburn and my face is a little rounder than it should be, but none of
the side effects compare with a dreaded relapse. I probably would have
insomnia but pain medication helps.

I don't want to give medical advice but it seems to be the medication of
choice for a lot of conditions and especially those involving neurological
problems. I would urge you to discuss it with your doctor before
discontinuing it. It could be that it is necessary to prevent relapse or
promote improvent. On the other hand, there may be something else s/he can
prescribe instead. Also, if the side effects are primarily insomnia and
jitteriness, it might be a good idea to be very persistent about demanding
something to help you relax and sleep.

Good luck.
Ellen