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Dear Suzan,
What a time you've had. I'm so glad to hear
you're much better. Your side effects from IM (Gleevec) were much worse
than most everyone Ive heard of. We usually just go through a couple of
months before they dissipate. I had muscle spasms in my back for a couple
of years and so certainly empathize with that. Thank goodness someone
finally really took notice and got you to a neurologist and gave you pain
meds. No wonder you've been depressed! Depression isn't always a
disease (except for the clinical sort caused by chemicals in the brain or lack
of them) and is caused by circumstances such as yours so as you improve you may
be able to give up the depression meds. That's what I've found. As
my circumstances improve so does my mood. Makes sense, huh?
So sorry for your suffering and happy for your
relief.
Best wishes,
Susan Loewenkamp
----- Original Message -----
Sent: Thursday, August 18, 2005 1:26
AM
Subject: [CML] feeling better
Hi all it has been awhile since my last post. I have finally began
to feel human after a year and half of being sick. I got sick in Feb 04 and
was dx in June 04. I began 400 mg of Gleevec the midle of June 04. I like a
few of the others have had terrible side effects that have continued until
recently. I was at 98% positive and in March 05 at 3% postive. I will have
another BMB in Sept. I was in the hospital last month with an upper resp.
infection and my daughter mentioned to my doctor about how severe my muscle
spams are. He saw me in agony and had a neurologist check me out while I was
in the hospital. He dx me with syptomatic torsion dystonia http://www.medicinenet.com/dystonia/article.htm and
I was prescribed a medication for the spams. I am due to have a follow up with
another neurologist in Oct for this. In the mean time I added a link to the
site I found and was surprised to find that they found a gene that is linked
to the # 9 chromosome. I am feeling better, my doctor has manged my pain that I continue to have
with pain med's down to two a day. The nausea is finally better, the diarehia
has gone away, the cramps are taken care of with the new pain med, and I am
finally at the point where I feel like getting out, and my depression
is being managed with med. I spend less time in bed now too. It
seems like this new dx and med has been a turning point for me. I showed the
article to my doctor and she found it odd to. She said she wished that she had
known that the spams were from something other than the Gleevec, since they
are a side effect of Gleevec. I asked if maybe that fact that this dx is
also tied to the #9 chromosome if there may be a link between the spams some
of us suffer is because maybe Gleevec somehow intensifies them. I never had
spams like these before. So finally after over a year in pain and other side
effects like others have said they do get better. I just wished it had not
taken over a year for me to get better.
Take care.
Suzan
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