ALZ?!? Now what??

Mckinney930

I'm so glad I found this forum! I'm newly diagnosed and beginning this journey with a lot "what now" questions. I'm trying to process the emotional side of this while piecing together all the things that need to be done to prep me and my family for what is to come.

I knew I was having trouble 2 years ago with cognative and memory changes. my neuro did some basic testing with no results. Fast forward 2 years… being a firm beliver in being my own advocate, I insisted on a full workup. Only thing she DIDN'T test me for was ALZ. After 4 mos of testing, nothing. Having severe Lupus, my Rheumatologist was very interested in the results because Lupus can cause brain probs as well. She referred me to another Neuro that had also treated Lupus patients. After reading my records, first thing he did was test for ALZ. And here we are.

Here's the challenge that I would love to have insight about. Between the lupus drugs that barely keep my inflamation in check, and the seizures I have due to a traumatic brain injury (and the drug for that), I seem to have embarked on a merry go round of drugs that don't interact with drugs I'm already on (the choices are limited). The discussion came up yesterday about the infusion to remove amyloid and the risk for brain bleed or swelling. My question - is there a higher risk of bleed for someone that had a previous subdural hematoma? Does anyone have any experience or knowledge about this scenario? My Neuro is checking if this aspect was tested during trials but didn't think so.

One final thought…piece of advice... thoughts from the peanut gallery ... DON'T BE AFRAID TO BE YOUR OWN ADVOCATE!! If you feel your Dr. isn't listening, find one who will. It's critical for managing your condition an giving you peace of mind. And, make sure you have a good care team that talk to each other. my Rheum, Neuro, cardiologist, and PCP get on calls together to discuss solutions.

Thanks for listening. It's cathartic talking about this with people that understand What you're going through!