My panic and new drugs

Kent Skov (kentskov(AT)msn.com)
Tue, 22 Apr 97 01:57:17 UT

Dear Groupees-
This is Julienne again ( initial onset w/urinary retention, sudden pain
11/96, parallysis waist down, recovered well and quickly to walking w/walker,
then slow relapse 2/97 - dem's my stats, Folks!) I've been virtually
paralized -for the second time around- since 2/97 with only little return.
Now my Neuro wants to hospitaize me again, this time giving me a NEW DRUG
mixture - ACTH (adrono cortico tropic hormone) and Cytoxin (cyclophosphamide).
This has me upset because I DON'T want to leave my babies again and he spoke
of many nasty side-effects to these drugs. Over the month I have been reading
these postings I've come to have more faith in the group than in a truckful of
doctors (dumptruck, mayhaps?). Has anyone had any experience with these
drugs?

Also, the study posted by DC Jones mentioned results based upon types of TM
onset. Well, my first onset was sudden, my second gradual; my first recovery
quick, this one slow-to-none. I'd love to hear from anyone with "relapse
experience". I read postings of folks with onsets around the same time as
mine and am struck with TM jealosy. How come you are doing so well and I'm
doing so poorly? (Don't start another discussion group about this, I'm
partially kidding. It is hard to convey irony on the internet, eh?)

Final 'also' - I have found that accupuncture helps!! After each session I
can stand a little while without my knees collapsing. It has also helped
balance out some of the rollarcoaster emotions which are included free with
your TM subscription. ( Kinda like a set of emotional Ginsu knives.)

We do another MRI tomorrow, decide on hospitalization Wednesday. I hope to
hear something from y'all before then, but if you don't see my little name for
awhile it will mean I'm back in the clutches of Nurse Ratchett, et al. Wish
me luck. (I know you do.)

Love,

Julienne