Wednesday, September 02, 2009

Today was supposed to be Tysabri D day instead......

what I was told is that UCLA still has not sent their report to my Neurologist (no suprise to me. After making a patient wait 4.5 hours after their scheduled appointment to be seen, getting paperwork done likely is as much of a priority as seeing their patients on time is). So, we have to wait for their report. He suggested changing to yet another CRAB, to which my response was a pretty adament NO. So now I wait to see what comes first. Another exacerbation, UCLA's paperwork or my next appointment on October 28th. Anyone out there want to start a pool?

Yes, I'm ticked off. One thing I've always tried to be in my blogging is very honest and upfront. I'm not one to sugar coat the hard times or ignore the good ones. Right now I feel lost in the shuffle. UCLA didn't do their job, but neither did my Neurologists office staff. They should have started calling last week for a faxed report. If they didn't get it by yesterday afternoon they should have changed my appointment. THAT is part of patient care.


Webster said...

I hear you, Kimberly. You've clearly explained what has(n't) transpired. It adds insult to injury when you seem to be lost in the "medical system shuffle" doesn't it?

It's one thing to vent here, but might I suggest that you write a civil but pertinent letter to your neurologist telling him how you feel about what has happened (or not as the case may be) and asking him to please do what he can to speed up this process? It might help; it can't hurt; it may make you feel a little empowered rather than at loose ends. He does, after all, work for you.

Courtney said...

I haven't been following your story for long but it seems crazy to me that you cannot have access to the drug you need and want. It's outrageous that a Neuro recommended that you try something different because of the inconvenience and not based on your medical NEED.

Good luck! Keep up the fight! It is worth it!

Kimberly said...

I've always wondered why i become such a wimp as the patient. The RN in my came raoringout for the first time yesterday when I told my Neurologist that under no circumstances would I return to UCLA. Making a patient wait for 4.5 hours is not only inappropriate it's unprofessional and unacceptable. My speech was met with total silence. Your cright about the letter. My only fear is that he would then drop me as a patirnt and sadly in my area there aren't many quality MS neuros.


Kimberly said...

Thanks for the encouragement! Sadly, I think it does happen that the treatment is what's easiest and not best.


Herrad said...

Hi Kimberly,
I agree with Webster, I think writing a letter to your neurologist is a good idea and hopefully you will get you clarity about your next appointment soon.