The title of my post is intended to be facetious – just to be clear. Oh, I am just being dramatic. Thankfully, thankfully, thankfully, this year has been pretty uneventful. Bryan has felt crummy this summer, but that’s the ebb and flow of things. The good news is that the FDA has until November to make a final decision on Lemtrada. This is the drug we tried off-label two years ago but haven’t been able to continue because the FDA rejected it. (It was approved by 33 of the other 33 countries who reviewed the trials… ) So if it gets rejected in November, Bryan and I are headed to Canada for treatment. As much as I love Canada, I’d much rather do this here. ***UPDATE*** I found out Canada won’t allow MS patients from the US to come there for Lemtrada so Germany it is!***
Bryan’s neurologist always runs late because he’s a very popular doctor and well known MS Specialist and he gives every patient his full attention. He was 3 hours late for our last appointment! But we’re grateful for all the times he stayed longer with us. Sometimes it’s us. Sometimes it’s you. All the time, it’s worth waiting.
Bryan has begun a monthly steroid infusion in preparation for the Lemtrada (here or Canada). The funny thing is that a home health nurse came by, poked a needle in his arm, handed him infusion bags with steroids, syringes filled with saline and a sheet of instructions for giving himself his own infusions!!! I am not kidding. Bryan and I were clamping down lines and swapping out bags like pros. Who needs a nursing degree when you’ve seen as many episodes of ER and Royal Pains as we have?!?
Seriously, it reminds me of the instructions in a box of at-home hair color.