Wednesday, August 20, 2008

The neurologist: The saga continues

I must go to work again today. Two flipping days in a row and it's still vacation. The good news is that I get paid for it. Yippee!

Me versus the neurologist's office

Me: 0

Neuro: 1

I called the neurologist's office yesterday and left a careful message stating that I had doubled my Ritalin (based on another medical provider's advice) and wanted to make sure the neurologist was good with that because I need a refill soon.

I also updated that I feel better off the Rebif, my thrice weekly injection.

I could tell the office person was either going through extra care to write it all down or just pretending to do so because the whole call took several minutes and I had to repeat myself a few times.

I wait for the call back from the office. No dice!

Honestly, why do they even ask me to call and then don't return my call? Is this some sort of twisted version of fun for people who work at doctor's offices who treat people with MS?

The last time I was in the office, a few weeks back, I had mentioned the lack of decent customer service skills and that my calls go basically unanswered in a figurative sort of way. My test results disappear, so does my chart, my messages don't get passed on to anyone.

We had our little chat and they said they would work hard to "make it better". Sigh, if this is better, then I don't know what great looks like in their world.

Part of my slowly simmering irritation is that when I was in the office last, we had discussed perhaps leaving Rebif and starting a newer (hopefully) disease-modifying treatment called Tysabri.

Tysabri isn't an injection; it's a more complicated way of getting MS medicine to you through a once monthly infusion. You have to jump through several hoops to get the insurance to okay it. There's the payment for the medicine and the payment to the clinic that infuses you.

It requires time off from work for you to drive to the infusion location and then to get the med delivered to you via IV. The infusion delivery covers an hour or two while nurses specially trained in administering this med check you before you go on your way.

You also have to let your last injectable drug "wash out" of your system for a period of time. You have to wrap your head around the fact that this is a newly back on the market drug and can cause some pretty significant side effects and/or PML. PML is an infection or something where things go wrong, verrrry wrong, and can be fatal. It was fatal for a few people when the drug was available on the market before and they're not quite sure why.

Recently, there were two new cases of PML reported in Europe since the drug was okayed to come back out and be used again. The shock waves have been felt around the world of MSers, trust me.

I am just toying with the idea of not being on anything except for symptom meds. No shots, no infusions, no more calling and waiting for weeks for simple issues to be resolved.

I'm just feeling defeated again and I don't like this feeling. People with chronic diseases should get reasonable care; we should all get reasonable health care.

If you tell me to call in a week and I do and you're not there for the week, it kind of ticks me off. When I call the next week and you ignore me again, then I start to simmer.

It's okay, maybe the MS will spontaneously cure itself. I guess I've got the time to find out.


Merelyme said...

yeah that would be nice if the MS would just hit the road...never to come back. i hear ya about the non-responsiveness of these medical places. it is bad enough we have MS but to have to hunt down our help...i mean...come on.

there are quite a few people in our little MS blog community who are trying tsyabri or who are about to try it. stephen...with his life...he is on it i believe. or maybe he has stopped taking it. anyways he is on my links.

i totally empathize with you that MS sucks and so does dealing with trying to get help. i hope you have better luck soon.

Patty said...

I think all specialists are like that. I actually stopped taking Adrian to the pulmonologist because I couldn't get them to answer my calls, therefore I couldn't get an appointment. They would leave a message telling me he was due, but when I called I couldn't find a human to talk to, and the few times I did they wanted to schedule six months out. I decided to let his pediatrician take care of the asthma.