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Posts posted by Chris1

  1. Just following up to say that I have indeed been diagnosed with ECDS. Starting on 10mg weekly injection dosage of methotrexate and hoping for the best.


    I will keep this community posted on the progress in case anyone else ever comes across this post desperate for info like I was, so they have a bit more to hopefully go from.

  2. Thanks for the response. Yesterday I did actually book an appointment with one of the specialists listed on your link, so am very happy to have found that info here. Unfortunately his first available appointment isn't until March, so that wait will be unbearable. 


    It's so difficult to find information on this specific form of the disease, so I've been hoping to find a way to connect with people that have it to know what their initial signs and symptoms were, since pictures I've seen online typically are late stage.


    Also I've been hard pressed to find anything else it might be. 


    Additionally, I've had a positive ANA on past blood tests and have horrible chronic GERD, which has gotten so bad that I've been diagnosed with Barrett's Esophagus. I've also long had Raynaud's. Not sure if there's a potential link between them all or not. 

  3. Hi, thanks for taking the time to read.


    I have developed a vertical indent on my forehead that I first noticed about a month ago. It has quickly become more prominent and I'm not really sure what to make of it. It stretches from the center of my forehead at my hairline to the corner of my right eyebrow. If I run my finger over any part of the line I can feel what seems to be an indentation in the bone.


    Does anyone know if this is congruent with initial stages of ECDS, or if not, what else it may be?


    Here is a picture:


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