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Mark,
We just wanted to thank you for putting us in touch with Ashar
Hasan. He was able to help us find a doctor in town and get us an
appointment with him the next day. We went to the doctor and he
actually told us the minute he saw my husband that he doesn't have
ALS and the reasons he said that. Those just happen to be the
reasons that we have never believe that it was ALS -- just never
knew what it could be until we just happened on CIDP by accident. He
told us that Tom would most like respond to CIDP and even went so
far as to tell us that we should probably buy a Bow Flex machine.
Tom is starting IVIg today and we are praying that it will help him.
It's been a long journey since he started getting sick and are
looking forward to seeing signs of improvement.
Hope you have a great day.
Thanks again,
B.M
Hi Ashar & Mark,
I just wanted to let you know that Dr. Jain has actually changed my
husband's diagnosis from ALS to CIDP because of his response to the
IVIg treatment. We saw a response to the treatment the first day and
have been seeing subtle responses every day since then. He is still
not able to raise his arms or legs but he can flex the muscles and
is basically stronger than before. He is also having an easier time
eating and talking and we've been able to lower the settings on the
ventilator. We have tried taking him off of the ventilator for a
minute at a time and he says he can actually breath on his own. He
can't actually take a full breath but we have an appointment with
his pulmonologist on Monday to discuss processes for weaning him off
of the ventilator.
We were not able to convince our doctors that Tom needed the IVIg
treatments even though all we had read had convinced us that he had
CIDP. No one would listen to us though until I sent the email to
Mark. I just want to thank you both for listening and helping us. We
are hopeful now that we will get back to a more normal life soon.
Thanks again!
B. M
www.cidpusa.org
www.cidpusa.org/P/ivig.htm
http://www.cidpusa.org/disease.html
http://www.cidpusa.org/Lahore.html
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