A New Diagnosis

Published January 12, 2016 by dcsteiner

It’s been a while since I’ve posted anything, but to be honest not much has happened until last week.

I finally had my geneticist appointment and they almost immediately dismissed my diagnosis of Marfan Syndrome. (GOOD NEWS) Which in turn means that I was able to quit taking my heart medication, Losartan! (BETTER NEWS)

The genetic counselor and the geneticist were very thorough and spent almost two hours with me in total.

After they were done asking me questions and checking out my joints they officially diagnosed me with Hypermobile Ehlers Danlos Syndrome. (???) I am still learning a lot about this diagnosis and really don’t have much information yet, except for the fact that I am way more flexible than the normal person. (I always thought I was normal, it was news to me that people can’t do what I can).

I also had an appointment with my primary doctor and he referred me to physical therapy. My first appointment is on January 22nd, so I will let you know how that goes!

Anyway, I hope to be more active on here in the future as things continue to move forward for me.



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