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Tuesday, December 22, 2009

Piece of My Merry Mind

Hello All,

Quick update: My doctor's office cancelled my prescription to Rebif with no explanation. They re-sent a prescription of Betaseron to the people at BetaPlus. That medicine arrived yesterday. I have already spoken with my personal nurse and we agreed starting after Christmas is the best option. Especially since we don't know how my body will react. I still have 2 Avonex shots so I will take one of those this week. I am set up for learning about Betaseron & how to do it on Tuesday, December 29th.

I am hopeful it will be easier to give because they give you this injector thingy, that's the official term ;) It is supposed to hide the syringe & needle. I just press a button and hold it in place while it injects the meds. I am nervous because this one is every other day instead of once a week. But it's the plan Dr. Beall originally wanted me on, so we shall focus more on the hopeful than the nervous.

As for the neurologists office... I am keeping my January 12th appt. and I will use it for complaining of how I was treated and all the miscommunication over the last 3 months. I am angry, disappointed and completely baffled over the latest events from there. I plan to tell him if it wasn't for HIM personally, I would leave the whole practice over this. I just don't want to go thru starting fresh again with a new doctor.

So my intent was to make this a brief holiday entry, hence the "Piece of My Merry Mind" title. However, it may be the drs office that will get a piece of something in 2010! Merry! Merry! And to all a good night...Love, Tammy

Friday, December 11, 2009

Mind Freak

Okay. Finally got a message, yes only a message, from my doctor's office. "The people at Betaseron are helping me appeal my insurances choice to deny me the new medicine." He told me to "continue taking the Avonex". I spoke with my contact thru Betaseron and she said my prescription coverage is changing soon. She would like to get me started on a trial of Betaseron so that I will be already established on the new medicine when the insurance switches. Apparently, already taking the medicine should help my chances of approval. It is free to me to start the meds, so I am on board. Problem? Of course. She is waiting for a new prescription authorization from my doctor's office. Well you can guess how that will play out. Wait. Wait. Wait.

So I call my pharmacy to have them ship my old medicine, Avonex, and they tell me they have another prescription for me: Rebif. I about lost my mind. Seriously, people? Really? Who the Hell is running this joint. My neurologist told me a long time ago that I am not a good candidate for Rebif. That it is not one of the approved medicines for someone early in MS. But NOW I have a prescription for it. Not to mention I have a new prescription medicine called in for me that no one informed me of or consuled me on. What the ????

I received a letter in the mail from the people at Rebif plus a phone message asking to set up my consultation to start these meds. All news to me! I told the pharmacy to cancel the prescription. They asked if I was sure? Yep. I will continue taking the Avonex even if I'm not approved for Betaseron. Unless someone can show me where it says changing to Rebif is now, miraculously a benefit to me and my form of MS, I'll stick with what I know.

The thing is, if Dr. Beall found new evidence that my MS is advancing, then I think I should be called before my meds are just randomly changed. I know he is supposed to look more closely at my MRI films with the specialist from Saginaw, but I don't think he's done that yet. I suspect that someone told him that Rebif is what my insurance rec commends and he authorized it or some nurse put the authorization thru without truly looking at my chart. I don't know. That sounds bad for my Dr. I don't think he would do that after he's been so insistent to not put me on it. I have nothing to go on, but my imagination.

I'm going to follow up on Monday with my contact at Betaseron to see if she's made any progress with my doctor's office. If not, I guess it will be time for a pop-in visit at Michigan Neurology. They may get to see a "Mind Freak" in action cuz it's all I can do not to break down and cry :(