[Reader-list] Fwd: Will to Life: My Tryst with MS

Sat Jul 29 18:26:45 IST 2006

Dear All,

I wish to share a couple of remarkable and compelling mails from Sabitha, an 
ex-sarai/csds independent fellow, with the larger community. Inspiring stuff.

cheers
ravikant

----------  आगे भेजे गए संदेश  ----------

Subject: One: My Tryst with MS
Date: गुरुवार 27 जुलाई 2006 01:23
From: sabitha t p <sabitha_tp at yahoo.co.uk>
To: jeebesh at sarai.net, ravikant at sarai.net, raviv at sarai.net

Dear Ravi, Jeebesh and Dr. Vasudevan,
In the context of Jeebesh's recent readerlist postings
on medical errors and alternative medicine, I thought
I should share this with you three.

Dear friends,

I feel an immense need and responsibility to share
with you all a few things that have been happening to
me over the past six months. Some of you know some of
it but I want to tell you the whole story so far.
Heres my story. Telling you this itself is a
cathartic moment, a moment of acceptance that has been
hard-fought. I was detected with possible Relapsing
Remitting Multiple Sclerosis in January 2006 and its
now been confirmed after my fourth relapse. Initially
it began with numbness/tingling in both legs and
severe backpain in late November,2005. The spinal cord
MRI I was asked to do showed a lesion and was followed
up with a brain MRI on December 15, which showed
multiple lesions. When I and my partner, Nitin, saw
the MRI report that said the clinical assumption
maybe multiple scelrosis (MS), the first reaction
was one of disbelief, and a vague sense of foreboding.
We soon got on the internet and read about
demyelinating diseases and of course, there was a
whole array of horrid things that could have been
happening. I suspect Nitin broke down, but was not
letting on. My reaction was one of shock, immense
sadness and wanting to know more since the only image
I had in mind about MS was of people in wheelchairs
(we soon realized theres a whole spectrum of MS
consequences and all cases of MS neednt be as severe
as that).
When we met the neurologist with the report, she
confirmed it was MS, but said that it could be benign.
It took me about 6 weeks to start feeling somewhat
normal again and just as I was recovering, I came down
with double vision, vertigo, nausea, complete loss of
taste and was now walking like a drunk besides not
being able to eat because everything tasted bitter and
I could barely distinguish flavours. That was the
first relapse.
I recovered from these symptoms in about 6 weeks. My
doctors didnt put me on any medication since MS was
still not confirmed. Again the same story repeated
itself. I was getting a little better, double vision
was more or less gone, taste had come back, I could
walk, though not very confidently, and Nitin and I
went out to celebrate these small triumphs over a walk
and a dinner and I went out to a couple of music
concerts. We also sat and made a daily regimen for me
that was nutrition-oriented: wheat grass juice,
grapeseed extract capsules, high doses of vitamin B12
tabs, fish oil capsules, certain enzymes, citric
juices, several servings of salads, whole grains, the
works. Generally tanking up on antioxidants. I was
also on alternative therapy (ayurveda) which is
nutrition-based. My father went to Kerala to meet the
director of Kottakkal who is doing research on MS and
I started following a rigorous ayurvedic routine along
with all the other stuff. And I added one hour of yoga
and pranayam to my schedule. I still am doing all
that.
Then the third relapse struck, this time in the form
of optic neuritis and partial loss of balance in my
legs in early March. I completely lost vision in one
eye. Again no allopathic medication was done and my
eyesight recovered almost fully and my balance too was
more or less back to normal by May. My sister and I
organised a big do for my father on his 60th birthday,
an evening of poetry reading, wine, dinner and
fellowship and it did wonders for my soul.
I have always been fiercely independent and it was
really hard to have been cooped up at home, not daring
to go out, suffering pain and disability. It was
important for my soul that I took my life back in my
hands. Nitin and I went to Goa for a holiday and I
stayed on in Goa on my own for 10 days in June
(packing all my medicines, doctors phone numbers, a
notepad, my laptop and some books). It was wonderful
to feel confident of being on my own again, walking on
the beach, going to art galleries, making new friends
with artists, poets and musicians in Goa.I came back
from there and then had a minor relapse (vision loss
in one eye again) and had to come back to be put on
intravenous steroids for the first time. (I am under
the treatment of the head of neurology at AIIMS). I
did 5 days of steroid drips and am now on oral
steroids for a month. This is to control the damage
each relapse can leave on the nerves of the concerned
organ. It is the build-up of these damages
(deficits) that may eventually lead to disability in
the case of Relapsing Remitting MS patients. Since the
last relapse happened after a gap of 4 months (the
earlier ones were every 6 weeks) my doctor thinks its
a good sign. And I am continuing with ayurveda,
nutrition supplements and yoga (besides oral steroids)
which possibly helped stabilize it to some extent.
Now I am functional again. The vision in my affected
eye is more or less back , I have no debilitating
symptoms  (one realizes the bare essentials one needs
in order to be functional: clear vision in one eye,
lack of pain, balance for walking) and have
joined back in college after a traumatic hiatus.
The support from Nitin, my family and friends has been
tremendous and I cant be thankful enough for that.
But all of us have also been in a state of denial, the
state where one thinks No, this cant be true, this
cant be happening to me, my partner, my daughter, my
friend. That is where sharing this experience with you
helps - in trying to deal with it. Especially since
its very difficult to communicate the fear, the
sorrow, the resistance, the presence of MS always
there in the background, occupying both the body and
mind-space. Now I have made my peace with MS and have
decided to take life in little doses. I read, write
poetry, work on art-related projects, am planning a
poetry society, and have been gearing up to join back
in college with enthusiasm and complete faith.
At some point through all this one realizes one has to
go on, re-prioritise ones life, do happy things,
read, write, work, listen to music, have time to think
and dream, have an occasional glass of wine. Cheers!
May everyone stay well.
Thank you all for listening and caring.
Warmly yours,
Sabitha.

What is Multiple Sclerosis?

Introduction
Multiple sclerosis (MS) is one of the most common
diseases of the central nervous system, Today over
2,500,000 people around the world have MS, though in
India it is far less common than in the West.MS is the
result of damage to myelin - a protective sheath
surrounding nerve fibres of the central nervous
system. When myelin is damaged, this interferes with
messages between the brain and other parts of the
bodySymptoms vary widely and include blurred vision,
weak limbs, tingling sensations, unsteadiness and
fatigue. For some people, MS is characterised by
periods of relapse and remission while for others it
has a progressive pattern. For everyone, it makes life
unpredictable.

Quick Facts

.       MS is a progressive disease of the nervous
system, for which there is no cure.
·	An estimated 2,500,000 people in the world have MS.
·	MS is not contagious
 ·	MS is one of the most common diseases of the
central nervous system in young adults.
 ·	There are four types of MS: benign, relapsing
remitting, secondary progressive, primary progressive.
·	Sclerosis means scars, these are the plaques or
lesions in the brain and spinal cord.
 ·	In MS, the protective myelin covering of the nerve
fibres in the central nervous system is damaged.
·	Inflammation and ultimate loss of myelin causes
disruption to nerve transmission and affects many
functions of the body including motor co-ordination
and vision. The severity varies widely.
·	While the exact cause of MS is not known, much is
known about its effect on immune system function which
may be the ultimate cause of the disease.
·	Some known triggers for relapses are: stress,
exhaustion, extremes of weather and hormonal
imbalances.
·	Life span is not significantly affected by MS. ·
There are a wide range of symptoms. Fatigue is one of
the most common.
 ·	The incidence of MS increases in countries further
from the equator.
 ·	There is no drug that can cure MS, but treatments
are now available which can modify the course of the
disease to some extent. They remain expensive and
unreachable for most.
·	Many of the symptoms of MS can be successfully
managed.
·	Please visit www.msif.org for more information.

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