Siem had an MRI yesterday and right afterwards we looked at the results with the neuro. Nothing special to be seen on the frontal lobes, but there was a big dark spot in the right temporal lobe. I know that FTD means Fronto Temporal but I didn't really realize that it could also be a question of these temporal lobes being affected and not the frontal lobes. I've got to research this. Anybody else out there with right temporal lobe deterioration? He took blood to do DNA testing (this has not been done for Siem before). AND he wants to do a spinal tap, gave me papers to read and sign. We would be participating in a research project on FTD. There is no charge for the blood work and would be none for the spinal tap (they will not even bill my insurance company) because the research is funded. I asked "what's in it for us" and the neuro admitted that probably the only benefit would be a more precise diagnosis. ANY adverse effect (although he assures us there are none) would also be covered by the research funding. I haven't signed the papers yet but dh is OK with it (inasfar as he understands) so I probably will, for the sake of the research.
Jeanette, Jim has FTD, with the Motor Neuro variant. I can't remember which lobes were worse, but he is now in a wheelchair, only able to stand long enough to transfer. His long term memory is good, his short term is like teflon, here, then gone. He now is having sob, and is having a sleep study. Swallowing is a problem, and his eppigilotis, has lost it muscle tone and just kind of dangles. We are hoping to participate in a program down in Boston that recently started up. It is a FTD Clinic. I was thrilled to find it. They are 75% treatment and 25% research. Where do you live? Our Neuro said it tough to say in which direction the deterioration will spread???? Aghhhh. It's never easy or clear cut.