Hello. I have a question if anyone could offer input. I have been diagnosed with Ehlers Danlos Syndrome, a connective tissue disorder affecting collagen, however it doesn't explain why I have felt like my face has been morphing lately. Neurologists and my opthamologist have noted that my left pupil is VERY slow to react to light and I have multiple progessive neurological changes as well. Multiple neuro's tell me they have no explanation. Until recently I thought it was my right side of my face that was drooping, but now I wonder if it could be the left side that is being lifted up or pinched.
When going through old medical records just obtained from my PCP I discovered that a fall 2008 lab test showed I had a positive ANA, high SED rate,high TSH (later have tested borderline low), high C-reactive, and high Antiscleroderma-70 antibodies. I had no idea what antiscleroderma-70 antibodies were. My lab result was 133 and positive was considered anything over 120 Au/ml. In reading about scleroderma, en coup de sabre and diffuse systemic scleroderma I felt like I was reading about myself. Now, granted I have LOTS of secondary conditions that could explain away lots of things, but the face changes have been bothering me and this is something that finally makes sense. I have had little colorless bumps show up on the left side of my face in the last 18-24 months. I look in the mirror and I don't look like "me." Something is off. I thought it was the right side, but others have pointed out lately that the left side looks like there is less fat, less laugh lines, etc.
Would anyone care to offer their opinion if they notice any hemitrophy going on? I do have alopecia on the left side of my hairline too where the hairline is receding above my eyebrow. My hair has been falling out for almost a year and I have been under lots of stress so my PCP has been telling me not to worry about it. I already have so many "rare" conditions I would hate to look like a hypochondriac, but an explanation for my face changes would be nice. Any input appreciated. Thanks.
i40.tinypic.com/x0rzg0.jpg Then and now
i42.tinypic.com/34ql45w.jpg Hair loss on left side (and I have THICK hair)