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We finally had our first appointment with Dr. Rao  - movement disorder
specialist - in New Orleans last Thursday.  After talking with us and
examining her, he has made an initial assesment that she has Lewy Body
Disease.  He immediately told us to stop taking Permax and Celebrex and
he has increased her dosage of Sinemet from 2 CR 25/100 to 4 CR 25/100,
leaving it up to my dad and I to find a correct dosage and timing
schedule.

Within 24 hours after ceasing her Permax, all of her signs of dementia
and delusions have disappeared.  No more anxiety.  No more hitting.  No
more delusions.  It is as though a miracle has occured in that respect.

We are, though, experiencing problems with severe muscle cramps in her
leg as she enters her off period.  We are now giving her one Sinemet CR
35/200 every 6 hours.  This is a 100% increased dosage per 24 hour
period.

Our previous medication timing was:
9 am - one Sinemet CR 25/100
3 pm - .075 mg Permax
9 pm - one Sinemet CR 25/100
3 am - .075 mg Perman

Our new medication timing is:
11:30 am - one Sinemet CR 25/100
5:30 pm - one Sinemet CR 25/100
11:30 pm - one Sinemet CR 25/100
5:30 am - one Sinemet CR 25/100

She enters an "off" period approximately 1/2 hour prior to her next
Sinemet.  By the time we give her the next dose of Sinemet, her muscle
spams in her legs are so severe that the effect of the newly taken
Sinemet does not "kick in" till approx 2 hours after taking it.

These spams are - to my dad and I - very severe.  Very tight muscles
that jump her leg all over the place.  She gets in so much pain she crys
and hurts so bad.  At least we are off of the Permax, in which case she
would be hitting out worse than ever.

We are trying to resolve this by cutting one CR 25/100 in half and
giving it to her like this every 2 hours - but so far, this doesnt seem
to be working either.  Dr. Rao said we could have gone with 3 Sinemets
in a 24 hour first, but her "off" time starts so soon that going this
route would be just as bad.

Does anyone have any recommendations?  At this very moment she is crying
out for relief from the pain.  We have given her Tylenol PM, and 2mg
Valium to help her, but when she gets in these states, even they do not
work.

PLEASE recommend what we should do as soon as possible.  I do not know
what we can do to help her and it hurts us to be so unable to assist her
in her time of pain.

David
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