I have been searching for a local doctor for 13 months. I have been "passed off" from doctor to doctor and no one will deal with the mast cell disorder.
I am in a large clinic system. The biggest problem is my oncologist agreed to help me and then disagreed with the diagnosis (doesn't believe mast cell activation exists and doesn't believe I have it). Because he is a VIP and VID (Doctor) I feel this has literally kept me from receiving the care I need.
I have started the process of getting his statement removed from my medical records but fear the damage is already done.
I have looked into a concierge doctor and the closest one is over 3 hours away. I would still need someone local to manage any acute needs.
I have two nurse case managers and a nurse navigator helping me. They have been on board since last March.
Have any of you experienced this? Do we have any legal rights to receive care?? I REALLY don't want to even look at legal counsel but am just not sure where to go next.
I JUST got a call from this 'wonderful' medical system telling me that there is NOT ONE doctor in the allergy/immunology dept. that will take me as a patient. They left a message 4 minutes before the clinic closed....
I am devastated.
My primary care doctor "dropped me" last month and I am looking for a new primary. They will take care of "the rest of me" but not the mast cell disorder.
How can you take the cells out of a person and just treat the rest?????
I am tired...starving and ALL my hair is falling out. (but otherwise my symptoms are fairly well controlled after Dr. Greenberger doubled my cromolyn!!)
If anyone has any ideas PLEASE post!! I know many of you have had problems, but I have NO place left to go!
Thanks!!!!!!!!