revlimid-semi paralysis?
- From: "jennifer" <jennifer.jakubiak@xxxxxxxxx>
- Date: 6 Aug 2006 17:29:25 -0700
I need some help or guidance with a condition my Mother is currently in
at the moment. First, in 2001 she was diagnosed with Non-hodkins
Lymphoma (NHL). She went into remission in 2002. It came back the
summer of 05'. This entire time she was only treated with
chemotheraphy. In March 2006, she was diagnosed with Myelodysplastic
syndrome (MDS). She started taking revlimid the day it became available
on the market, June 29, 2006. She took 14 out of the 28 pills.
A short description of what has been going on since Friday, July 21st.
My sister and I brought her to the ER two Friday's ago when she was
acting very confused and not normal when I spoke to her over thephone.
Her temp. at that time was 104. She spoke and moved very slowly. Her
fever broke on the following Tuesday but then she was interacting and
using
her motor skills less and less. On Wednesday, she did not speak or move
at all. Yet, we still did not have any answers. Then they moved her to
the ICU unit this two Thursday's ago and put her on a respirator and a
feeding tube.She was constantly sleeping...whatever this bug is..had
her tuckered out.They have performed extensive tests and ruled out a
few things.
Below is the list of what is not wrong with her:
-not a stroke
-nothing with the heart -actually she has an excellent heart beat
-not meningitis
--Her cancer port is not the cause
-not a urine infection
-white cell count is not extremely high -that would be a sign of like
meningitis or something along those lines...
-no blood in the spinal tap
-not lyme disease
-not geombrey syndrome or anything along those lines
-could not find any typical infections
-did not find anything wrong neurologically (the Neurologist basically
said she has performed all "brain"-type tests and can not find
anything wrong with my Mom) so she has to step aside for now and let
some of the other doctors do some tests -like the cancer doctor, and
the infectious disease doctor.
-waiting on West Niles virus results
There are four things my Mother SHOULD NOT be doing in this condition
according
to Karmanos.
Anyways, they are the following;
1. Stay out of large crowds (this is a toughy/impossible)
2. No gardening-I just found out she was also doing this lately.
3. Continously going up and down the stairs is too exhausting for an
MDS patient
4. cleaning anything with animals-like bird baths, cat litter, etc.
Currently, she is off the respirator, can focus on people, can squeeze
your hand(very lightly), wiggle her toes and she was moving her head to
follow people around the room. She is still shaking her head to answer
questions too. She totally knows what is going on around her and she
can hear just fine. It depends on the day though..she is not
consistent.
they are now repeating tests-CAT scan still negative, spinal tap No. 2
so far negative. Still waiting on other culture results.
Today, August 6th when I saw her in the ICU -she was sleeping heavily.
She was also coughing in her sleep even though she is in this
neurological disorder sort of state. I was told that is a good sign(the
coughing). 15 days and still no answers is very frustrating!
So my question is has anyone heard of such a condition with a
MDS/cancer patient? Were they taking Revlimid? Or is this something
else?
Any sound medical advice would be GREATLY appreciated. Thank you.
.
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