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Waiting...

Jan 27, 2016 - 7 comments

"Nothing moves quickly with MS." Words I have read a thousand times written by others that are now my living reality. I am ready to move into "Phase II" of this - meds. My neuro prescribed Plegridy with my input as my first DMD. That was November 18. Of course, the drug was denied by my insurance (even though I had called in advance and was told it was not a step-wise drug).

My neuro sends in an appeal right away, and about a month later I get a temporary approval letter stating I can start on the drug. That was December 18. Here I am on January 27 with no sign of starting on this thing. I am so stressed about the side effects and how I will manage them with my busy life! I just want to get going & learn how to manage this.

I have called my neuro office twice this month - I waited given the inevitable year-end delays. Both times the nurse states that it should be through and that she will follow up with Biogen. I called Biogen once, and they have absolutely no record of me in their system. I have pushed out my next neuro appointment because I see no point in taking the time to meet when (a) I have no significantly new Sx and (b) I haven't yet started on the meds.

Honestly, all of this is feeding into my desire to pretend that this Dx never happened. What if there was a mistake in the diagnosis? Could it actually be something else? Or nothing at all other than a blip on the radar of health? Maybe Plegridy isn't the drug for me? Maybe there is a reason that this has become so difficult? Will I need to constantly chase up after people to keep things moving? Ugh!

Of course, I will pour all of this out here...and they will probably call me this afternoon. Frustrating!!!

Vent all done. I will continue to wait.

Cheryl

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9745005 tn?1410044366
by 4happygnomes, Jan 27, 2016
So sorry you are getting the run around!  Even going through the diagnostic process, it seems you always have to be your own advocate..it's frustrating!  I hope you get the approval soon and can start the meds with no side effects!  


Thinking of you!
Karen

5265383 tn?1483808356
by aspen2, Jan 27, 2016
Yes, it's so frustrating ...  I'm again in the  position of waiting, although the first thing I was waiting for was actually bumped up ... until today.

Just so you know, everyone I know IRL who has started on a new med -- it actually does take a while to get it started up.  Up to three months for a friend of mine here. So you're still okay -- only a month in.

I know it's still stressful though... ((hugs))

11079760 tn?1483386130
by cjtmn, Jan 27, 2016
...and Biogen called today. I'm such a whiner!! Thanks for indulging me. When the script was first ordered in November I didn't think I'd have any issues given I had already called my Insurance. My personal take is that they dragged their feet at year-end because I had already met my max out of pocket for the year.

Regardless, here we go!

5265383 tn?1483808356
by aspen2, Jan 27, 2016
Woo hoo!  And she's off!!!

14117157 tn?1452054966
by JaneyLee13, Jan 27, 2016
The waiting game does suck!! I am glad you heard from Biogen, wishing you the best of luck getting started and no side effects to speak of :)

5112396 tn?1378017983
by immisceo, Jan 30, 2016
We all have to just get used to being "that annoying patient". Embrace it! This is your health. I had my own dealings with this this week, though it had to do with having to fight my corner to not have my anti-depressants run out (baaaaad idea!) and essentially forcing an appointment to happen stat. Somewhat similar situation, as in a referral had gone AWOL, no appointment was scheduled, the practices making assumptions about the other taking over my care, the usual nonsense.

Sometimes we have to spend hours on the telephone, follow up the emails daily, find healthy outlets for the frustration, whilst always keeping in mind why we're doing it. It never becomes fun, but it can become your default. (I got my script too! Drinks all round!)

11079760 tn?1483386130
by cjtmn, Feb 01, 2016
Thanks, everyone - I really detest having to be so assertive all of the time. It is a bit against my nature, and I feel like I use up every last drop of that skill at work, so in my personal life, I'd like to just be me. BUT, I take the point about keeping in mind the "why". That will help me to persevere when my natural inclination is to put my head in the ground.

And immisceo - WOO HOO on getting your script refilled! ((slĂ inte!))

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