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Since I began displaying symptoms of CDIP in April 1999,
I've been receiving IVIg almost every month, at an average
rate of 120g per treatment. Plasmapheresis 10 sessions, twice
a week, after overcoming a tetraplegia. Some worked for about
one month only, seemingly less than the effect of immuneglobulin.
Since September 2000, I have also been taking azathioprin
225mg (Imurek + 20-05mg corticoids). Unfortunately my GBS-situation
hasn't changed since May 2001. I receive monthly infusions
of 16 bottles immunglobulins, i.e. 4 days x 4 bottles à
10 grams in 200ml solution. Besides, 225mg azathioprin and
5mg of cortison per day.
(1 bottle costs 1.500 DM at the hospital and about 2.000 DM
on the free market!).
I have recently begun trying to teach part-time while receiving
regular treatment at the Allgemeines Krankenhaus Harburg (General
Hospital of Harburg) hospital. My physician there is the Honorable
Prof. Dr. Eberhardt Schneider, neurologist, specialized in
Morbus-Parkinson.
In addition to working, I am also trying to get acquainted
with the facts of this disease: Is there hope of overcoming
the disease?
Learning about this is difficult, as I do not have any training
or theoretical introduction to medicine/therapeutics in general
or more specifically, to GBS.
My problem is two-fold: on one hand, exchange of information
with physicians is difficult, due to my being a layperson.
On the other hand, there is my lack of knowledge of recent
developments in science and research on GBS.
I have been trying to find out about research on GBS
without much success. The publications of the main GBS association
of Germany help, but don't offer a thorough and precise overview.
Besides, patients and medical knowledge seem to be rather
atomized in Germany (lack of global strategies). Access to
the GBS-scenarios in France, Great Britain, the US and other
countries is difficult.
I am presently trying to find out more about steroids and
GBS. I have found a study by E.E. Baulieu, France: "The
use of Progesterone on rats for the regeneration of myelin
sheaths". Is there anybody who can suggest ways to find
out more about this?
I have put together the following questions that I feel
concern all patients of GBS:
- What is the actual medical/pharmaceutical research situation
regarding the practical therapeutical use of progesteron
in human GBS patients, and what are the chances of it speeding
up recovery?
- Does demyelinisation, such as in GBS, occur in other diseases?
- Do researchers studying these diseases pool their resources
and share results?
- Who is who for these questions? (neurologists, immunologists,
virologists, interdisciplinary teams, institutes, projects,
etc.?)
- Are any global strategies against the atomisation of GBS
patients regarding i.e. randomized studies, therapy centers
and so on? (blue prints of supranational health organisations,
European Union, international NGO foundations, experts in
the fields of science...?)
The idea behind these questions is based on the presumption
that:
- There are few GBS-patients, more or less scattered all
over the world.
- Existing laywomen/men -organisations haven't much lobbying
power.
- Science might not be sufficiently interested in the growing
importance of aging, interrelated diseases, in cooperation
with basic research, etc.
- The pharmaceutical industry isn't keen on GBS-research,
which is considered a non-profit undertaking. It should
be persuaded to change its attitude (lobbying, public support
and funding... ).
Meanwhile, my pain seem to slowly destroy my personality
and my drive to be of further use to society and to have creative
ambitions. There's a big black hole in front of me.
Staying at the hospital and teaching in spite of illness
prevents normal life and normal functions, such as answering
mail and other business promptly.
As my personal situation (GBS patient undergoing treatment)
does not permit me to undertake a deeper questioning of GBS,
I appreciate your offer of a forum in which to ask these questions
of those it may concern, and thus advance the unity of GBS
patients a little, many of whom are desperate and feel very
isolated and helpless vis-à-vis the medical world.
Best regards,
Konrad Tiburzy
11.2001
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