Boston report-out

What a whirlwind trip! Thanks to the service of many dear friends who provided airline buddy passes, Boston lodging, airport shuttle service and Seattle kid-watching, it was a good one.

On Thursday night we were able to fly the red eye on buddy passes on a completely full flight from Seattle to Boston! Though we got very little sleep on the flight, everything went smoothly. By the time we hit Boston we were blurry-eyed, but able to get to our rental car, get some breakfast, and get to Massachusetts General Hospital (MGH) with 20 minutes to spare. We changed in the bathrooms and then sat and waited for the Rheumatologist that we had come to see.

Unfortunately, the meeting was somewhat of a flop. In short, the new doctor was unfamiliar with ALS-like syndromes and, as a rheumatologist, those cases he sees that do sometimes have motor neuron impact (like clear-cut lupus, myositis, etc.) typically have stronger and more specific lab findings. He WAS interested in the unusually high number of 'weak-positive' findings in my labs, but was clear that our case did not met the criteria of the type of clear-cut autoimmune diseases he is familiar with. He was willing to run his own labs in hope for finding more evidence, but was doubtful the findings would be more definitive. Seth had his blood drawn and we left without a clear path forward.

After leaving his office we met with Dr S, a diagnostician we've been working with for six months. He joined us in our frustration with the unsuccessful appointment, especially since we had flown out specifically for this appointment. Before coming, we had contacted Seth's ALS doctor, Dr C, and asked to meet her since Amy had yet to meet her. Dr S joined us to meet Dr C. We all sat down and this is when the magic happened. They both agreed that the same weak positives that did not qualify us for a clear-cut case of lupus, ARE highly unusual for ALS. They both agreed that there are some things we can try in the way of immuno-supressors and IV antibody (IVIG) treatment to determine/influence the autoimmune component of our case. We left this meeting with a clear plan of action for us and our doctors, making the whole trip worth while. We give thanks for progress in all its forms:)

Lunch on Newburry Street

The Boston LDS Temple...not our favorite picture of us, but the building is amazing!