08-10-2023, 09:34 AM
Haven't heard from the neurologist since the scan. Very odd. I didn't trust my tactfulness at this point, so I let LCFi communicate with him with this missive:
Hi, Dr. XXXXX--
Lori White (Gary Shockley's wife) here. He knows I'm writing this note and has approved it.
We received the results of the NMRI but we have to admit we're a bit surprised that your office hasn't contacted us regarding a follow-up visit to discuss the results in more depth. The information we received from your colleague basically just reiterated what you (and we) suspect as well as your conclusion that physical therapy and exercise are currently the most useful tools for preserving function for as long as possible.
We do still have questions. For example, did the imaging give you a better idea of where Gary is in the course of the disease? Is there a timeline (even tentative) for its progression, and what might that look like? Various websites such as the MSA Coalition website spoke in generalities about symptoms but gave little information about what we should be looking for and when, and when to notify you about changes or whether to approach his other doctors (for example, his urologist for urinary issues, a gastroenterologist for constipation, his sleep specialist for RBD, etc.).
A phone or video visit would be fine.
Thank you--
CF again. Then after a couple days, we got this:
I already asked my staff to schedule follow-up appointment to go over this in more detail, they just have not called you yet. I apologize for the delay in setting up the appointment, after returning from vacation there is a mountain of messages to catch up, so I admit my request for the follow-up visit was delayed. These are all great questions that we will review during the appointment.
Best Regards,
XXXXX
CF again. Whether he acted before LCF's missive or after remains a matter of conjecture. BTW, while he was on vacation, guess who he had cover for him? Yep, my first neurologist, the one that I feel was highly dismissive, and whom this new neurologist has staunchly defended. Makes me feel a bit queasy....
To be clear, I suspected MSA last May and mentioned it by name. I asked my first neurologist if the brain MRI showed anything. She said no but said she'd recheck it and have a colleague do the same. She got back to me and said no. What she didn't tell me is a plain MRI isn't a good test. She should have prescribed the NMRI witrh dye, in my opinion.
Then I told her about my history of physical dreaming. I had read in the literature that it is associated with neuronal damage in the cerebellum and is one of the hallmarks of MSA. She simply said, "Oh, that's a sleep problem, You should see a sleep specialist. Then she offloaded me to them. She couldn't get rid of me fast enough. It seems she's telling me, "You're old; deal with getting old problems." I do expect some downturn, but I was doing 10 pull-ups and 25 crunches during a single hang from a bar at 70, and at 72 1/2 I can barely walk.
So, yeah, I begrudge her. With my typing skills of last year, I could have tackled my secret project a whole lot easier than it is now with my eror-prone touch-typing.
Still waiting to hear about a follow-up.
later, CF
Hi, Dr. XXXXX--
Lori White (Gary Shockley's wife) here. He knows I'm writing this note and has approved it.
We received the results of the NMRI but we have to admit we're a bit surprised that your office hasn't contacted us regarding a follow-up visit to discuss the results in more depth. The information we received from your colleague basically just reiterated what you (and we) suspect as well as your conclusion that physical therapy and exercise are currently the most useful tools for preserving function for as long as possible.
We do still have questions. For example, did the imaging give you a better idea of where Gary is in the course of the disease? Is there a timeline (even tentative) for its progression, and what might that look like? Various websites such as the MSA Coalition website spoke in generalities about symptoms but gave little information about what we should be looking for and when, and when to notify you about changes or whether to approach his other doctors (for example, his urologist for urinary issues, a gastroenterologist for constipation, his sleep specialist for RBD, etc.).
A phone or video visit would be fine.
Thank you--
CF again. Then after a couple days, we got this:
I already asked my staff to schedule follow-up appointment to go over this in more detail, they just have not called you yet. I apologize for the delay in setting up the appointment, after returning from vacation there is a mountain of messages to catch up, so I admit my request for the follow-up visit was delayed. These are all great questions that we will review during the appointment.
Best Regards,
XXXXX
CF again. Whether he acted before LCF's missive or after remains a matter of conjecture. BTW, while he was on vacation, guess who he had cover for him? Yep, my first neurologist, the one that I feel was highly dismissive, and whom this new neurologist has staunchly defended. Makes me feel a bit queasy....
To be clear, I suspected MSA last May and mentioned it by name. I asked my first neurologist if the brain MRI showed anything. She said no but said she'd recheck it and have a colleague do the same. She got back to me and said no. What she didn't tell me is a plain MRI isn't a good test. She should have prescribed the NMRI witrh dye, in my opinion.
Then I told her about my history of physical dreaming. I had read in the literature that it is associated with neuronal damage in the cerebellum and is one of the hallmarks of MSA. She simply said, "Oh, that's a sleep problem, You should see a sleep specialist. Then she offloaded me to them. She couldn't get rid of me fast enough. It seems she's telling me, "You're old; deal with getting old problems." I do expect some downturn, but I was doing 10 pull-ups and 25 crunches during a single hang from a bar at 70, and at 72 1/2 I can barely walk.
So, yeah, I begrudge her. With my typing skills of last year, I could have tackled my secret project a whole lot easier than it is now with my eror-prone touch-typing.
Still waiting to hear about a follow-up.
later, CF