What if it's not FTD???
Dave's new neurologist did a range of blood tests that came back with a lot of abnormal results, showing a lot of inflammatory activity and auto immune issues. Despite the MRI, he believes it is a central nervous system inflammatory condition . . . . and my mind is spinning! Are you kidding??? I've educated myself on FTD, I've gone to conferences on it, I feel a community with the people who are dealing with this, I've financially supported the AFTD, I'm doing this blog of our journey - I"M ALL IN! But now I feel I'm on my way out and freefalling! There's nothing definitive yet. How frustrating!
We are seeing an oncologist on Thursday for further evaluation of the inflammatory markers and possible paraneoplastic syndrome, or "hidden cancer". What a roller coaster! What do I do now? A central nervous system inflammatory condition. That's what we're looking at now. I don't know what's next with regard to a definitive diagnosis. I don't know anything about progression, prognosis, nothing! I don't know what to do next! I don't know if there's support out there for an unnamed disease!
He has all the symptoms of bvFTD - but that makes sense because he does have atrophy in the frontal and temporal areas - so he would suffer the same losses in ability, the same changes in personality, the same odd behaviors. But his progression has been so so slow unlike so many others. It makes me wonder how many others who have been living with this for a long time, who have experienced the slow progression, may actually have a different diagnosis than FTD? I wonder if we're on the right track looking at something else?
One comment the doctor made was that he may not get drastically much worse. Which is good, right? But at the same time, that means this is my life for a very long time. I'm having a very hard time wrapping my brain around it. It's a different journey. I guess in part because we don't have anything definitive yet. I don't know. I don't deal well with all this uncertainty!
So, I need to think on all this, cogitate a little. Maybe take up drinking. I don't know. Unfortunately with my current state of mind, nothing looks to promising or rosey....so there's an adjustment needed.
Curiouser and curiouser. Do I change the name of my blog if we end up with a different diagnosis? This all feels so weird. It's not like finding out you don't have cancer or something....it could be more bleak. I have to come up with a different life plan! No impending demise. We'll see.
Happy holidays to me - and Dave did tell me he doesn't care if we decorate or anything.....he used to love Christmas just like I do...or did. This year has been enlightening in realizing some things just don't matter to him. This is a lonely journey, FTD or central nervous system inflammatory condition. . . which is a mouthful by the way. FTD is much simpler to say! Right?
Santa, please bring me a shiny pair of those rose colored glasses for Christmas!
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