I am baffled by my neurologist

[22cyclist]

I am supposed to be coming off of Tysabri this last infusion. So, my neurologist calls me herself all in a fret about me needing to have some blood testing done while I have my port accessed. She pressed me to remember to tell them to look in the computer for the orders. Well I did, and once again I come off looking like a crazy person because she has written no orders. When they finally get her, I am thinking they are doing this because I am going on Lemtrada or something next. NOPE, how about they ordered neutralizing antibodies to Ty. WHAT?? I am so baffled.

This MS clinic often leaves me baffled. Its like the right hand is not telling the left hand what it is doing. I will talk to her about it on the 6th but good grief people could you leave me any more in the dark?

Thanks for letting me rant.
Lisa

[Kimba22]

NOPE, how about they ordered neutralizing antibodies to Ty. WHAT?? I am so baffled.

This MS clinic often leaves me baffled. Its like the right hand is not telling the left hand what it is doing. I will talk to her about it on the 6th but good grief people could you leave me any more in the dark?

My guess is she wants to find out if this is the reason for your flares?

Not sure what to say about the MS clinic. Suppose all you can do is tell your neurologist. If it continues, maybe the clinic needs to "clean house." I know mine has ... more than once.

Keep us posted on the results.

[MSW1963]

22cyclist, I can't tell you how many times over the years I've had similar experiences with my MS doc, the infusion center, doc's on call colleagues, nursing staff, after getting specific instructions from MS doc.

The infusion center I used was in the medical center as my doc, which you would think would make communicating with other departments more efficient, but no.

I had a PML scare and according to protocol my Ty infusions were interrupted until MRIs and labs came back negative.

I called the doc's office for over 2 mos requesting info about resuming Ty because of the possibility of a rebound exacerbation. I eventually got 'through' to someone on the staff the importance of my repeated calls for +2 months. Plus office staff treating you like a neucence, neurotic, who's imagining things.

I wish I had a suggestion or advice, but it seems to be the nature of the beast? Idk.

[kelm10]

who

Two suggestions I would want to talk to would be the office manager to make sure they know what is going on. I highly doubt in this day and age that there would be a patient advocate, but, would never hurt to ask. Let them know that you are just trying to make things better for everyone.