Saturday, March 14, 2015

day of MRIs...need spoons!



Last month I went for my Day of Scans...I literally spent my entire day in this machine, with only a couple of breaks - one of which was to do a CT scan in another machine. I drove three hours, getting up before dawn to endure this torture. It was a very interesting experience indeed - one I never want to repeat.

This machine is an upright MRI machine  - used for diagnosing Chari Malformation, among other things. So after all these cans last month, I then got to wait around thinking I might, in addition to my ever-growing diagnoses, have Chiari Malformation...which would mean likely a need for brain surgery. You can maybe imagine my state of mind.

My geneticist, who ordered these scans, called to let me know that my insurance now covers telemedicine, which meant I do't have to drive the three hours in a different direction to go to his office for the results - I could just have a skype call with him instead! I am loving this insurance company and what it covers. I'm told this is the result of The Affordable Care Act, so thanks, Obama!

I got my results the other day - no Chiari Malformation! YES!!! But...ovarian cysts instead. not what we were scanning for, but there they were. And...this is something I'm not really surprised about. given my utter inability to lose weight no matter what I do or eat, and my insulin resistance, I'm pretty sure that's PCOS...I rechecked the symptom list and I pretty much have every single one. Yet another dx to add to my ever-growing list. This is NOT ever what anyone wants to collect, let me tell you.

So I made an appointment with my primary, who can also do GYN stuff, and mentioned PCOS. W're going to go ever allthethings I've learned since my last visit with her and get her really coordinating my care...something I seem to need - the one to oversee all the others. I don't think she knows about mast cell activation disorder, but I do think she is willing to learn, so it's a start.

I just keep hoping that as we keep collecting puzzle pieces, one day we will be able to put them all together and find the thing that will help me lose this weight. I think we're getting close, and that it has to do with Dysautonomia/POTS and PCOS....but I have no idea what the solution is yet.

Ever forward. Ever exhausted. Spoon!

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