Hi cereus, my mom was diagnosed'ed with FTD two years before her ALS diagnosed. She was seeing a neuro who specializes in FTD at the time. She was then referred to the only Certified ALS Clinic in our region, and there is only one doctor who sees the patients. I think that diagnosed, and treatment are slow in coming because both of these diseases are so rare. Maybe the Doc's are unsure of themselves. Of the four neuro's I've had the "honor" to meet with, none of them had a good bedside manner--very arrogant. I feel, that even though they have this "God like" attitude, we have no choice. In our case, the Doc knows his stuff, and he's the only ALS Specialist in our area. Of course he's been educated, and knows about FTD--he's a neuro. BUT he did offend my mom during her first few appointments, acting like she was not even in the room, ignoring her while she was speaking because he couldn't understand, and acting like she was totally mentally challenged. She never said anything about it but I sure did, and he now treats her with respect.
Also, there is a book titled, "What if it's not Alzheimer's?" It is a caregiver's guide, and is REALLY good. It's all about FTD.
In our case, the regional medical center we go to, has a neurosciences clinic that deals with everything. I would think that Mayo would have a similar type clinic. My mom only sees the one Doc, she wants nothing to do with more appointments and medical stuff. I know there are a couple of people on here who are dealing with this dual diagnosed, maybe they have better information.
Good luck,
Laura
