Has anyone been diagnosed with Livedo Reticularis or Sneddon Syndrome?

I started showing the lacey purple/red pattern on my legs in June 2021. No one had a clue what was wrong with me. In Dec, 2022 my legs turned purple with horrible blisters and the toes on my right foot turned black. Luckily, I only had to have one toe amputated. I spent 8 days in hospital w/o a diagnoses and was sent home. The lacey pattern continued on my legs. I was told to wear support stockings.
Dec, 2024 the same "event" happened again. My legs were purple, blisters on my legs and hips, the tip of my nose turned black and my lips were very swollen and all ten fingers turned purple. I was sent to a larger teaching/university hospital and spent three weeks there. Once again, no one could definitively diagnose what caused it. I had all ten fingers amputated. I've since been told by my Hematologist/Oncologist that I had Livedo Reticularis from the start. This doctor was not working with me back when it started or I probably wouldn't be in this situation.
I'm still being told that the cause is undetermined, but possibly cold temp related. I've had numerous blood tests and five bone marrow biopsies. After the second event they believed I had MGUS and CLL. I've had five Rituximab infusions in 2025 which appear to have cleared up my legs. But, I'm now noticing some slight discolorations again on my right foot and ankle.
Has anyone experienced anything similar to this? I'm terrified it's going to happen again and next time lose my foot or leg. My Hematologist/Oncologist is still trying to determine why this happened.