I’m My Own Patient-Advocate Now

A week ago Monday, a nurse in Dr. O's office called to give me the results from the last MRIs.  Basically, they were useless, showing no changes from the first. No surprise, really, since I just had the first set done so recently, and nothing standout causing my visual disturbances.  As soon as I hung up, I remembered that I'd forgotten to ask about starting treatment.

I called right back to leave the message that I'd like to start Avonex if he'd prescribe the smaller needles (25 gauge instead of 23).  If he wouldn't, for whatever reason, I'd do the Rebif.  Smaller needles for Avonex were mentioned in the literature the Dr. had given me; they just have to be prescribed.  He'd previously said a phone call would be enough to get started.

Then I waited.

On Wednesday, a different nurse called to give me the same MRI (non)results.

Um…don't you people have some sort of intra-office communication going?  “And while you're at it, has the Dr. left an answer to my message?”

“What message?  I don't see anything in your file here.”

Um…again with the communication!  So, I left the message again.  I was feeling a little antsier — I had my gumption up to start injections the first day, but was starting to flag a little more each day.

And again, I waited.

Finally, at 4:30 pm this Monday, the Dr. called.  I could tell within 10 seconds that he had no idea who I was or what I was asking for.  He gave me a wishy-washy greenlight and when I asked how this would actually get started — if they'd contact the mail-order pharmacy directly or if I should call the nurses at his office — he just went, “uhh….” until I offered to just call the office.  He was relieved and said bye.

I left work, got a horrible eye/headache, and went to bed for 16 hours.

So, late Tuesday morning, a nurse from the office called me to say my prescription was ready.  Should they fax it to me or would I prefer to pick it up?

I'd already taken a sick day, so I agreed to stop by after lunch.  I'm glad I did.

I went all the way to the hospital, jockeyed for a parking space, and made it up to the 5th floor.  The receptionist was, I swear, maybe 14 years old.  She handed me an envelope and closed the frosted glass window.  Since I already had suspicions about their competence, I stood in the waiting room and opened the envelope

This is what I saw.  “Short Avonex needles.”  WTF?!  Do you know a single pharmacist that could fill such a vague order?  It would be irresponsible, if not completely impossible!  And this might be for the needles, but it didn't look like it included the basic medicine prescription.  Or did it?  What are those runes on the right side?

I stood in front of the frosted reception window until she opened it again.  I showed the 14-year-old receptionist the scrip and asked it it included the orders for the medicine itself, or just the needles.

She went off to find a nurse, who came up to the window.

“Hi, Miss James. Did you have a question?”

Yes.

“Isn't this what you asked for?”

Probably not — and in fact, it was not.  It took a few minutes, but finally, I realized that the nurse thought I had already started treatment and just wanted to switch needles.  (What is my chart for is nobody ever looks at it?!)  I had to convince her that I had not started treatment and needed a REAL prescription.

“We weren't sure what to do.  You're the first person to ask for smaller needles.”  Um — I find that hard to believe (who wouldn't want smaller needles?)  and disconcerting, because it probably means they don't really have that many MS patients in that office after all.

The nurse had to fill out some extra paperwork, including special forms from the manufacturer, to actually create the prescription.  She looked like she'd never seen the paperwork before.  “I think you have to sign some of this.”  She pulled out those post-it “Sign Here” flags and stuck two on the second page.

I signed by the first one, which basically just said I was willing to accept any/all the services offered (free counseling by nurses over the phone, an in-home injection lesson, junk mail for life, etc etc).  The second flag was stuck on the part of the form where the doctor makes the actual prescription choices (types of syringes and needles).  It was tempting to write for myself, since I was the only one there who knew what was going on, but…I just handed it back and said, “I think the doctor is supposed to fill this part out.”

“Okay!”

I asked a few questions about how those forms would get to my insurance company to actually start the shipments (3 month supplies), and the woman had no real idea.  She said that Avonex, who was getting the forms first, would “handle all that” and magically know how to get them to my insurance company.

I have no faith that this will actually happen.

This afternoon, I called the MS Center of Atlanta and made an appointment.

Starting May 25, I'll be seeing a doctor who specializes in MS and who has excellent and capable phone-answering staff well over the age of consent.  I'll let you know how it goes!

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