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8 months ago

I had a set of issues through June that, apparently, weren’t due to an active lesion. Usually I would have a radical onset of an issue, they could see a bright lesion, they would slam me with a ton of steroids and it would go away. Seems this time that wasn’t the case. My neuro said he suspected I was transitioning to SPMS. What I had done in the past would no longer be effective and my current DMT (Rebif) would no longer be effective. Most RRMS transition at some point, I just didn’t want it to be now…or ever. He recommended a switch to Ocrevus and if I wanted help supporting a disability claim or case that he would sign anything.

He is great and a knowledgeable but it just wasn’t the message I wanted to hear, from anybody, ever. I now acknowledge this was a little unreasonable of me 😉 So- just to confirm I requested a 2nd opinion from our leading medical facility in the US, the Mayo in Rochester Mn. It is only a couple of hours from my house so I stayed with a friend in the area and went to appointments with various member of their staff through an entire week.

The most helpful session was with a MS nurse that talked with me over an hour. She wanted me to start at the beginning…what were my first symptoms and when. How was my MS diagnosed, when and by whom. When did I notice other symptoms, what all symptoms do I have, how many attacks have I had, when and if possible to determine what triggered them. To prepare for this I had as much as possible written down in a note book that I could refer to when she pressed for details.

I also had a list of questions/issues that I definitely wanted answered that week. By being organized and really know what I wanted out of my time there, and letting her know what I needed, I felt satisfied with the results. They basically seconded my neuro’s assessment so while there was no change in treatment plans or direction I did feel much better about the path.

I think too many of our appointments are for too short of a time. We are pressed into a one hour appointment and sent back out onto the street. That just isn’t all we need sometimes. Knowing I had whatever access I needed into experts for an entire week gave me great peace of mind. In the end I spent a couple of hours with that nurse and the Dr that came in at the end of the session, an hour session with a Neuro Phys and a wrap up hour with the Dr again at the end of the week. Being organized for the sessions, taking notes during the sessions and coming home with a plan was just what I was looking for.