Welcome to Connect, @isabellereine. You’re not crazy but you certainly are complicated! ☺️ For being only 23 years old, you’ve had more than your share of medical adventures and my heart goes out to you for some of the symptoms you’re experiencing.

Firstly, congratulations on graduating from college. I can only imagine the challenges these progressing symptoms are causing you. The itching alone is enough to drive someone bonkers. I had experienced those syptoms early in my diagnosis…totally unrelated to yours! Many ailments can be behind itching, not limited to Polycytmenia vera.

Your current hematologist has tentatively diagnosed you with mastocytosis. From the information provided by Mayo Clinic (link below) mastocytosis often involves itching. This can happen when mast cells that protect the body from allergens mutate, creating abnormal cells that set up a continuous allergic response. Another of the side effects can be an enlarged spleen.
https://www.mayoclinic.org/diseases-conditions/systemic-mastocytosis/symptoms-causes/syc-20352859
Your doctor is suggesting Ayvakit, which is a medication for controling mastocytosis. It might be a good place for you to start. You may find it works for you and you can put the thoughts of PV to rest.

Another consideration, since you have a complicated medical history, you might want to get a 2nd opinion from Mayo Clinic. Here’s a link to their website where you can initiate the request for an appointment if you’re interested. http://mayocl.in/1mtmR63

I’m curious, why are you hesitant to start your treatment with Ayvakit?