What did I feel? I guess a bit relieved to finally be meeting with ‘the experts’, nervous and hopeful about the disease modifying meds, and, as ridiculous as it may sound, there was a very small piece of me that was holding onto the hope that I would be told the reports and testing were wrong and that I in fact DID NOT have MS.
Let’s just say the appointment was both more and less than I had expected. We met with two neurologists, both of whom were very knowledgable and thorough, and particular about looking at the actual MRI ‘films’ as opposed to reading the report written by the radiologic technologist. The problem with this was that we soon discovered that the technologist who burned my CD neglected to include the images of brain scans. And of course the majority of my lesions, and those that are causing my symptoms, are in my brain.
Furthermore, they informed us that they want to conduct more baseline tests – basically, so they can track the progression more accurately. Why not work on slowing down the progression imminently? Instead, they seemed more interested in making certain they have a thorough report of my relapses and progression.
One of the tests they want to conduct involves taking fluid from my spine. I am not looking forward to that one.
I asked a few times why they were not recommending me for disease modifying drugs, ASAP. Typical science-minded professionals: they want to be able to track, track, track.
Ah well, fingers (and toes) crossed I will not have another relapse before August – the date of the many tests and possible recommendation for an appropriate disease modifying drug.