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.
have a great day.
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.
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or CIDP is a gluten free diet, 30-40 % disease for reversal. See
our celiac section of cidpusa website.