My Appointment With Dr. Francomano

April 16, 2015

For those of you who don't know, I have a rare genetic condition called Ehlers Danlos Syndrome (EDS). This condition causes defective connective tissue which is basically the glue within your body. Many people experience hypermobile joints, painful joints, stretchy and soft skin, scarring problems and many other symptoms. Dr. Francomano is one of the top doctors for this condition and people travel from all over to see her. It takes over a year to get an appointment with her. On Tuesday, I had my appointment with her and I wanted to share it with you.

I shared this on Facebook but I wanted to be able to share it with others, so here is how the appointment went:

First of all, she was absolutely amazing and that was the best appointment I've ever had. She didn't doubt a single thing I said and also wasn't judgmental about anything.

The main concern is that I have Chiari and cervical instability so I will be getting an upright MRI and a CT scan for those. Chiari is something we have been thinking about for a while but didn't quite know who to ask about it. Thankfully, Dr. Francomano ordered the tests without us even having to ask! I also got a medication for headaches although, I need to get blood work every month because it can cause your body to become acidic.

She also diagnosed me with Mast Cell Activation Disorder which has to do with allergies. She has put me on a very strict diet and after 3 weeks, I can start adding foods back to see how I do. I also got something that I mix into water and drink before eating which should help with my GI symptoms.

I got a prescription for shoulder braces and things for my shoes due to flat feet and I'm to get a sleep study. I'm also to start wearing my neck brace more and I've already noticed that helping with my neck pain.

I'm sure I'm missing things, there was just so much information! We were actually debating on wether we should go or not because we didn't know what else she could do for me, but I'm SO glad we decided to go.

I have also fallen in love with Baltimore! The people were just so nice! Everyone would hold the door open for us, even teens, they would say have a nice day, they were just genuinely nice people. I want to move there haha.

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