My husband was diagnosed early in 2018. He also had rapid onset dementia...it was tough. We were dog mushers and spent weekends on the new river trail in Virginia. It was tough to give that up.
When he started on Imbruvica, his dementia started to go away within four days! Come to find out, it was Bing Neel syndrome, a rare side effect to Waldenstrom Macroglobulinemia. Our journey is not over but his quality of life is much improved.
How long did it take to be properly diagnosed?