Subject: Intro

From: Jack Schnapper <[email-masked]>
Date: Mon, 18 Nov 1996 17:31:48 -0500

Hi -

I am kind-of new to this list.  I say "kind-of" as I was a member several
years ago and chose to leave as all was (and still is, btw) under control.
But I have now decided to re-join to see what new things have been
happening and to share the experiences of my wife's MS as well as those of
our family.

Robin (45) was diagnosed with R/R MS in 1982 and until about 3 years ago
had only about 3 mild exacerbations.  During a particularly prolonged
event, during which her (then) neurologist was treating her with oral
prednisone, it was my membership in this group that led me to the
conclusion that she was not getting adequate treatment.

The doc she was seeing was a local neuro and, I suppose, is fine for some
things.  But I wanted Robin to see someone who had a more MS-focused
practice.  As we live in the metro Washington DC area, I thought that this
shouldn't be to difficult.

Fortunately, through some investigation by knowledgeable people and the
connections of others, Robin was able to get an appointment with Dr.
Stanley Cohan, currently the Chairman of the Department of Neurology at
Georgetown University Hospital.

Dr. Cohan, after taking an extensive history and conducting a thorough
examination, determined that the prior neuro was looking in the wrong
place.  The MRI's that Robin had been given were of the brain.  Dr. Cohan
decided, based on the fact that Robin's symptoms mostly manifested
themselves in her extremities, that her MS was more centered around her
spine.  He ordered 2 MRIs for later that evening (one plain, the second
with contrast) of her spine.  The results confirmed his suspicions.  In
addition, after ordering the MRIs, he had his admin assistant order
home-based Solumedrol (1000mg/day for 5 days) to begin the day after the
exam.  Everything went smoothly although the Solumedrol didn't seem to make
any difference.  Dr. Cohan fore-warned us that this might be the case as
she might have, for that exacerbation, missed her "window of opportunity."

Robin was then put on Betaseron which she took for about a year.  But she
never liked Betaseron because of the site reactions.  Fortunately for us,
Dr. Cohan and his associate, Dr. John Richter, were running one of the
sites for the Avonex study and they put Robin into that study.  This was
after the double-blind portion of the study had been completed.  All of the
600 subjects in the US participating in this phase of the study were
getting actual Avonex.

Robin has been on Avonex, via the study, for @65 weeks now.  Although the
drug has been approved by the USFDA, she continues to get her Avonex for
free until she has completed 104 weeks, as this was one of the guarantees
that she was given by Biogen.  She has taken much better to the Avonex,
especially since she only needs to get one injection per week (I give them
to her as she cannot bring herself to do it) and there are no site
reactions.  More importantly, it appears that the Avonex is making a
difference.  Although she has had another exacerbation while on the Avonex,
it was much less severe and the symptoms ended about twice as fast (with
the help of Solumedrol) with no noticable residual effects.

So, that's our story for now.  I'd like to hear from others who are using
Avonex to see what their experience has been.

Thanks,
Jack

 Jack Schnapper          [email-masked]
----------------------------------------------------------------------------
"The right of persons to be secure in their homes
 against unreasonable search and siezure shall
 not be violated, unless the federal agents outside
 the building are too tired to wait around any longer."

    -  from "The Politically Correct Guide to American History"
                 by Edward P. Moser, Crown Publishers, 1996