I love reading everyone’s updates! I haven’t been great at updating lately, but I’m trying to get better at it.
I haven’t been having the greatest time lately. So I’m still in investigative & waiting mode before they’ll definitely say PLS and not ALS. I’m working with neuromuscular neurologists at both UCSF and Stanford. Everyone once in a while, one of the doctors will want me to try another test, so this last time they had me do a paraneoplastic panel and I came back positive for the AChR Ganglionic Neuronal AB, S. For a brief moment in time I was relieved and thought, maybe they were wrong all this time and I don’t have MND! I was wrong...womp womp.
Apparently, this antibody doesn’t have anything to do with MND and it’s affecting a different part of me altogether. So they said, “You’re just lucky and have TWO things going on, which isn’t uncommon with autoimmune and neurological diseases.” And to add icing to the cake, this particular antibody has a high risk of cancer, particularly lung cancer. My brother, nephew and two different grandparents all died from cancer, including several cousins, so with that history they sent me for a chest CT today. I haven’t gotten the official report back yet, but I asked for a copy of the images to bring home with me. My husband is an oncologist, so I asked him to look at them and he said he can see about 8 or 9 lung nodules. But he immediately told me not to panic. It doesn’t necessarily mean it’s cancer. We live in an area with bad air quality so it’s possible I’ve had these forever. They’re also fairly small so they probably couldn’t even be biopsied at this point. So he predicts that they’ll just monitor me and have me redo the CT in 3 to 6 months. So now I’m anxiously awaiting the radiologist’s report and subsequent neuro’s call.
Other than that, I’m kind of going through what feels like a wave of downward progression but could also just be that my meds are wacky and i don’t have it dialed in right. If I don’t take enough Baclofen, I’m so stiff and I get myoclonus all over my body, but if I take too much, I have no spasticity to keep me upright! I’m getting a lot weaker in my legs. I used to just have weakness in my left leg with spasticity up to about my knee, now that has gone all the way up to my thigh and has also traveled to the right leg up to about the calf. I‘m starting to have daily falls. Not major, but enough to usually bring me to the ground in an ungraceful attempt to catch myself and not do serious damage, so I realize I need to use my walker more inside the house. I prefer to furniture and wall surf because we have a very narrow, older house and it’s kind of clunky getting the walker around, but I know I’m playing Russian roulette. I also think I’m in denial about it all so I’m being stubborn.