Well if I fall asleep during this email just know it has been a long, long,
long, few weeks.

Saw my rd yesterday and there is not enough good words or bottles of good
wine to thank him.  A good doctor is worth their weight in gold.  He still
says it is from the enbrel and says that is it for enbrel, remicade and
humira - positively.  He tried to get ahold of the neurologist to talk to
him as he is not confident on the inflammation thing and still is talking
demylination even if it doesn't show.  He would like me to wait 10 days and
if no change in symptoms is going to do a 3 day 1 g a day medro drip (can
you say wired?  How much valium do they have to give you to do that?  That
is 100 x what I take now! Anyhow would be done in the hospital - that
goodness).  He would have to co-ordinate it with my gp as he is 67 and not
allowed to book me into the hospital - go figure.)  He also talked to the
leading authority out of Stanford University who is giving a talk at the ACR
in 3 weeks.  She concurred with his opinion and said see if there is any
change in the 10 days and then do the drip.  They didn't feel there was any
malpractice for waiting - side effects of the drip are plenty.  I am seeing
improvement in my movement re the physio I am doing on my own but not in the
physical symptoms.  Still no voluntary urination - need the catheter full
time, stilll hard to pass a bowel movement - not really voluntary, still
numb in all the same places and still tingly although they gave me
clonazepam and lyrica and that is helping tremendously with the tingly - it
is their but it doesn't hurt.  Unfortunately I am spaced out completely
hence the fatique.

He was concerned about the catheter as am I.  The bladder is definitely
still irritated and I several times a day get blood in it - definitely red
from the walls of my bladder.  Not just spots.  I also get spasms from the
bladder - definitely the interstitial.  Don't know what to do about that.
Will try to get in touch with the urologist today.  No news on when it will
go.

And the other news.  Where I thought the neurologist said it would be 2 - 6
weeks and it would be over the specialist in Stanford and my rd were
mentioning months for recovery.  Ken my son said the neurologist said 2 - 6
weeks for the acute stage.  I didn't hear that.  A tiny bit depressing.

Anyhow falling asleep so time to get off the computer and have a nap.  The
catheter also does not drain well when I am sitting (blocks) so I need to
lie down occasionally.

Thanks everyone - eventually this will be settled.  I have to have some
hope.

Kelly