@sarcomasurvivor It sounds like you are off to a good start. You are asking good questions and really thinking this through. You said in your post that, "my symptoms fluctuate by time of day" and I'm just wondering if the symptoms are worse when you are tired? If so, this is a good point to bring to the attention of the doctors that you speak with.

I'm looking forward to hearing from you again as you continue to search for answers as well as help. Keep advocating for yourself. You are doing a great job!