I have connective tissue disorder - RA. My Dr. is Anu George of Seven Corners Medical Center. I am on a study for Celebrex research. This is over in July and then I will start a weight loss program from Pfizer
I have to wear a mask to sleep. Otherwise, my face and eyes will hurt. This started four years ago. I tested low positive for Systemic Sclerosis but MCTD is hereditary and I had positive RNPs.
i need to be diagnosed in central new york. Rochester or syracuse areas. Anyone u know i could go to? Im in unbearable pain with most of the symptoms as well as my child and they keep sayingbmaybe fibromyalgia. thank you
I have open angle glucoma borderline. It's staying the same way. I had a Retnal repair (due to trama) in my left eye and have a buckle from that surgery. I also have Retnal dystrophy in that same eye. Now I have 2 black spots in that eye and after 2 years of eye exams and MRI and an MRA the Retnal specialist and nuero opthalmologist still doesn't know why I have 2 black spots. Do you know what this could be that I can throw at them for a lead in the right direction???
I do not have EDS, but I do have MCRS and hypogammaglobulinism and receive IVIG monthly as well as the H1 and H2 blockers. I have been unable to be fitted with glasses and continue to have blurred vision. I have been to the retinologist , eye muscle m.d., and lastly to the neuro ophthalmologist. I have been told that I should wear 3 different pairs of glasses and should see a Psychiatrist. Are you aware of any eye manifestations in either MCRS or CVI, could you refer me to a journal ? Thank you for your time to answer my note. Jo Ann Somers
Thank you! Doc has set me up to see a genetics specialist. Wish me luck.
I have connective tissue disorder - RA. My Dr. is Anu George of Seven Corners Medical Center. I am on a study for Celebrex research. This is over in July and then I will start a weight loss program from Pfizer
I have to wear a mask to sleep. Otherwise, my face and eyes will hurt. This started four years ago. I tested low positive for Systemic Sclerosis but MCTD is hereditary and I had positive RNPs.
i need to be diagnosed in central new york. Rochester or syracuse areas. Anyone u know i could go to? Im in unbearable pain with most of the symptoms as well as my child and they keep sayingbmaybe fibromyalgia. thank you
I have open angle glucoma borderline. It's staying the same way. I had a Retnal repair (due to trama) in my left eye and have a buckle from that surgery. I also have Retnal dystrophy in that same eye. Now I have 2 black spots in that eye and after 2 years of eye exams and MRI and an MRA the Retnal specialist and nuero opthalmologist still doesn't know why I have 2 black spots. Do you know what this could be that I can throw at them for a lead in the right direction???
I do not have EDS, but I do have MCRS and hypogammaglobulinism and receive IVIG monthly as well as the H1 and H2 blockers. I have been unable to be fitted with glasses and continue to have blurred vision. I have been to the retinologist , eye muscle m.d., and lastly to the neuro ophthalmologist. I have been told that I should wear 3 different pairs of glasses and should see a Psychiatrist. Are you aware of any eye manifestations in either MCRS or CVI, could you refer me to a journal ? Thank you for your time to answer my note. Jo Ann Somers
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So, every patient with EDS must say to the optometrist or ophthalmologist that they have EDS!!
I do look angry.
I have the other 2 but not the mongoloid slant.