Update…and it’s irritating!

So I have been waiting and waiting to get the OK to go on the Multiple Sclerosis medicine called Gilenya. I have since learned that getting on any of the MS drugs takes a long time (2-4 weeks on average-me lots longer), and it’s a red tape nightmare. This is the sequence of events that has pissed me off (this time):
1. Submitted Gilenya form on 11/6 (2 weeks late)
2. Doc’s assistant forgot to get actual prescription signed by Dr. had to fax it back in. 11/10
3. Was denied by insurance, insurance asked for questionnaire (appeal) to be filled out and sent back on 11/26
4. Insurance officially denied the medication on 12/4 due to never receiving the questionnaire.
5. Said questionnaire was faxed on  12/4
6. Saw Dr. Egan and ripped him and his assistant a new one for this all slipping through the cracks. He apologized and admitted it was wrong. GOOD! 🙂

While all of the above is going on, I am talking to his office requesting things, trying to get things done. I am talking to my Navigator and Nurse at the Gilenya Go program trying to help them get this stuff rolling along. They were great at keeping me notified as to where we were at and what we were waiting for (the Prior Authorization). So now, we are waiting to see if the “Urgent Appeal” form is being accepted and if it’s been received by the insurance company. If that is denied (again) then Dr. Egan has agreed to start the process to get on Avonex (a weekly injection that I will have to do *ugh*). I am to call him on Wednesday and speak to his assistant and see where we are at.

As far as the weight loss goes, I am up. I am frustrated. I have no motivation. I am irritated. I am sad. It’s been hard to accept this whole diagnoses. I did have 3 rounds of Joint Fluid Replacement in my right knee and was fitted with a custom off set brace. It is helping. I know the weekly injections in the knee made me uncomfortable enough I didn’t want to work out. But it’s feeling good, and I am getting used to the brace. I was breaking it in with the Singing Christmas Tree last weekend and my knee didn’t hurt. So they tweaked the brace so I’d feel it a bit more. It’s working better, I am a bit sore when I take it off. 🙂 So that’s where I am at right now, in a waiting game, still working on wrapping my head around MS and learning what it’s going to be like.

I did sign up for the Walk MS 5 k on April 19, 2014 in Portland. If you’d like to donate, please click this link and help us find a cure for MS: MSfits for Melissa Thank you!

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