Trial update (And wait. There's more.)

I met N at Sonora for my blood draw.  They didn't have our appointment in their records!  So we waited.  And waited.  And waited.  N called someone at Hope to bring what N needed for our appointment we were going to do at Hope but now she wanted to get done while we waited.  Of course, as the person arrived, we got in for the blood draw, which went fine.  I went to the bathroom and gave N my cup.  I signed the visit log and we called it a visit.

I almost forgot something!  (Shocking, I know....)  While we were waiting, N told me the latest about the extension trial and it's totally different from what I've heard so far.  It's a 3 year extension (instead of 2).  MRIs continue to be brain only; I mentioned how I thought that was wrong and she said she has heard that from other MS trial patients who, like me, have had lesions on the spine.

And the kicker: the trial drug is only administered after a relapse.  Yes, that is what she said--no drugs until/unless there is a relapse.  I indicated some concern about the criteria for a relapse and told her that I've already had one that Dr. G does NOT consider a relapse.  She thinks there is specific criteria, but I'm not sure how that works or if I believe it will make a difference.

I didn't tell her specifically about wanting to get evaluated for CCSVI, but she may have an idea of what is going on (from other MS patients), because when I told her I was concerned about continuing in the trial in case I wanted to explore other treatment options, she was quick to tell me that I can withdraw at any time.  She was emphatic that I needed to know that I can withdraw at any time.  (Hmm, what am I excited about?  I can withdraw at any time!)

BTW, when we were talking about MRIs, N mentioned that Symon (the place that does the MRIs) also does the mammograms for some of the other trials and Symon has a new procedure that seems a little questionable.  (But I am already skeptical of them since it took 8 months to get my MRI results after I waited almost 2 hours to have my last MRI....)  Apparently, they have started requiring a breast ultrasound with the mammogram.  While the ultrasounds are considered necessary for some women with "denser" breasts, this sounds like a money maker to me.  I think I'm coming up to the age for my next mammogram, so I found all of this interesting.  She mentioned that most insurance doesn't cover the ultrasound.  Surprise, surprise, surprise!