One of the real issues seems to be having access to Doctors who keep
up with
what's new. Our real frustrations are related to getting doctor
access and
attention.
I know what you mean. I was the same way with my wife, her onset was
completely paralyzed in 4 hrs. We lived in Dallas, great hospital, but I
was in a daze for the first day. Doctors having me wait while they
looked for others to get involved. Then I realized "Hey, you guys work
for me!!", not being rude but insisting on quick and complete workups
and results of all test and not letting them leave without a exact time
of return. They were put off by my actions, but after days of not
letting up I got the attention for my wife I PAID for and deserved. So
never be put on hold if you feel you are unable to get the attention,
believe me, go somewhere else as you drop a line to the doctor you left
informing him as to why you left and stress his failure to help you and
yours in your time of need. When you go to another doctor explain why
you are there and set the ground rules right from the start. It does
take away from the stress and worry, are we getting the taken care of
in a timely manner, because with us time was very important.
Steve's (my husband who has TM) experience was really negative.
When he first started having symptoms, he saw our GP who prescribed
some
medication that didn't have any effect at all. It took a week to
get an
appointment with her (and she is just the PA, not the MD) and all
she did was order up some tests (mri's). It took another week to
schedule that,
three more days to read the darn things and then two more days to
call him
back to take more pictures. Then, they recommended a
neuro-surgean. It
took a week to get to see him, only to have him refer the case to a
neurologist. All this time, no useful treatment or even relief
medication
was provided.
It was a full three weeks before Steve got on the steroids that
actually
slowed down the process of the disease and another month before he
was
diagnosed with TM and prescribed Neurontin which actually was the
only
medication that seems to help him. This has been extremely
frustrating.
This doesn't seem to be the way to run things. Anyone got any
comments?
Amy Thropp
Don't give up!! You have to fight for your right to good, timely
treatment. Good luck with any and all doctor's in the future
Ed