It was beautiful morning for a drive with a couple inches of fresh snow on the ground and in Pennsylvania that is a non factor for traffic and roads. We were off to Patti’s Neurologist appointment at the Hershey Medical Center, the finest medical facility that the revenue from chocolate can build.
We talked about Tysabri. Just is NO WAY that any insurer will approve Patti to even try at her level of MS. Neither is there any evidence nor reason to believe it would benefit someone at Patti’s progressed stage of disability.
As always (and in spite of increasing problems transferring) Patti tests well for leg strength. She baffles neurologists as it is her 'perception of falling' more than physical ability that affects her mobility. The acceleration of her cerebral related MS symptoms over her physical related MS symptoms over the last several years is a most rare progression of MS.
For once it was enlightening though frustrating. Some how between Patti’s Care Facility and associated physician group they never received, misplaced, or lost a fairly significant ‘outpatient letter’ from Patti’s July appointment. …. Again one of those transitional glitches. As a home/caregiver you would know you were missing something or had not received something and would pursue it. Institutions do not have that simple check and balance because of all the staff and shifts involved. In this case the only check and balance is the next appointment, 6 months later.
For example, spasticity which had begun about 9 months ago and was first treated at an introductory level of Zanaflex of 2 MG at bedtime has continued and even worsened. However NO increase in dosage has occurred in the last 6 months. … Yet specifically detailed in the outpatient letter is a program that could have increased that dosage 6X by now. Along with a couple other related programs aimed at bowel and bladder control.
This is not to say any of this would have worked. It’s just frustrating that it hasn’t been tried. It’s all about transition. ... at least we all can get back on track and on the same page.