New here. 99.9999% sure my kids and I have Ehlers Danlos and also Chiari Malformation. My son 22 with Asperger disabled physically unable to eat anything without getting sick. Bones always dislocated. So sad. 4 yr old screams every night with pain in her legs. Horners eye and head tilt double vision. Still waiting for neuroOphthalmologist to call after referral. Nobody wants us!! I would like to post mri scans of me. I can see it in my right side mri worse than the left. But for some reason they did a fuzzy job on that side. I still want to get opinions.
I’m in CT. Disabled since 1995 after first pregnancy. (They said fibromyalgia although I’ve always had neuro symptoms). Uh oh...2012...Surprise .... pregnant again at 47. Had a severe reaction to preg right away.. anxiety flushed legs swollen from pots. Prob from hormones making ligaments lax and huge blood flow my veins could not handle. Kidneys started going downhill and BP high so they thought it was VERY early preeclampsia but then decided that it wasn’t later. Idiopathic? Went downhill after my 4yr old was born ..numbness and no circulation in legs and feet. Pots still severe. Compression helped until toes went blue. (Closed toes hurt my feet). So I can’t wear stockings anymore. Then my health crashed totally in Jan 2016. I couldn’t even turn my head. Severe pain, anxiety clumsiness difficult talking. Flushing. Heart rate 160’s. Ea doctor said something different. All ended up dumping me. I’m bed ridddn now and everything goes out if joint. Working on getting braces and ANY specialist help for Ehlers esp for my kids. They’re in so much pain. 14 yr old has severe pectus excavatum. He has all skeletal criteria for Marfan but I doubt it. Unless it came from his father. So it’ll be 8 months to a year before he even gets a scan of his aorta to rule out Marfan. Then the pectus doc will see him. Even though he has coughing tachycardia loss of breath.
I’m so sick of these mercenaries that call themselves doctors. Saw a neurologist (he ordered the mri which he said was normal of course). He says I don’t have Pots ...what??!!’ He says stress can cause the neurological issues. Insane! My foot (plantar plate) tore this month and I've got a new rectal prolapse (lovely). Have no idea how the toe will heal with no circulation. Phew overwhelming. Please let me know,if anyone has a chance, how to post scans on here? Thank you