Gary,
I'm no expert here but this sounds concerning to me. It was my impression that
the spinal tap they did in the ER was to establish if there was a viral cause
of the TM (or was it bacterial? - sorry I always get the 2 confused). They
even put me on meds just in case and sent the sample to the mainland to have it
tested. When it came back negative, they stopped the meds. I always kind of
raise my eyebrows at doc's giving meds 'just in case'.
Unless you feel like you're having another attack, it seems to me that the
original 'attack' of TM is long past and you're just dealing with the aftermath
of the attack and treatment meds, like most of us. It sounds like she wants to
treat you as if the inflammation in your spinal cord just started, rather than
recognizing that it was just the culprit that originated all the problems you
have now, leaving you with a myriad of symptoms to deal with! It sounds like
she's read something about TM and remembers this piece, but doesn't understand
where all the pieces fit! But I well may be wrong, here, and welcome differing
opinions!
I was fortunate that the neuro who was in the ER had seen a case of TM before
and had the 1,000 mg/day for 5-days routine of methyl-prednisone started within
13 or 14 hours of my sudden paralysis. Within 3 days I could wiggle a muscle
in my knee, and went from there. On the other hand, she doesn't seem to know
anything about the aftermath of symptoms I deal with, and seems to think if I
can stand up and walk, everything's fine. But hey, you can't have everything!
At least I'm not still paralyzed!
Good luck,
Sally
