Autism, juvenile oligoarticular arthritis, heart defect, kidney stones

Posted by samigrace08 @samigrace08, Dec 16, 2018

Hello everyone! I’m 18 years old and really need to get my medical conditions under control and figured out, so I was hoping some of you had some ideas.
I was born at full term, seemed to be healthy, and went home right away. Apparently I was not a great baby sleeping for 10 minutes at a time and would scream otherwise. At 3 months I had to be resuscitated and was on an apnea monitor for 4 months. at 2 years I was diagnosed with an auditory speech delay which eventually got me diagnosed with Autism spectrum disorder. At 3 I was diagnosed with juvenile oligoarticular arthritis only affecting the right and then eventually both knees. Since my last flare almost 8 years ago, I have had chronic pain in my joints. even ones not affected by any inflammation. My rheumatologist says that I am hypermobile but I did not score high enough on the beighton scale to be diagnosed with a hypermobility syndrome or Hypermobile ehlers danlos syndrome, because I am not hypermobile in my fingers which counts for 4 of the 9 points. I have extremely soft velvet like skin but no atrophic scarring and I tend to Subluxate my si joints and hips and shoulders. I was recently diagnosed with a bicuspid aortic valve which is a congenital heart defect. and I have multiple kidney stones. I get periodic episodes of severe joint pain and weakness where I need to use crutches to get around and walk. All of this is of course taking a toll on my mental health leaving me with depression and anxiety. and I have been tested for everything it seems like. I forgot to mention that my arthritis has moved to my eyes with uveitis and scleritis. Someone please help if you have any ideas. I can tell you that it is not lupus and not lyme disease as those have been ruled out multiple times. thanks


I have multiple specialists and doctors for all of these symptoms. I am just looking for guidance on where to go next. thanks.

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I think you should get retested for EDS. Dr. Karl DeDios is an Geneticist and specializes in EDS, he’s at Dayton Children’s Hospital. He is excellent. He diagnosed me a few months ago and I am a 64 year old woman and still very flexible. I had over 50 symptoms and like you I have been all over including Mayo, Cleveland and John Hopkins.


Did you get a full food allergy test done? Blood work is the best method for checking for food allergies. Also have your Calcium, Vitamin D and your PTH all checked out at the same time. It’s possible that you might of been born with food allergies and or Primary Hyperparathyroidism


I had a Lot like you and was misdiagnosed at MAYO CLINIC. SO last week i was called and told I have hyprochromtesisis. Which at birth your born making took much IRON. YOU WILL LOOK LIKE YOUR ANAEMIA is rapid on your body. Women have a way to get rid through menstruation. But it is a very slow process. This can cause all kids of arthritist. You can not eat chocolate ,no caffeine ,no high iron. Foods ,no process meat,,low sodium. Diet. No salt. I went to hematology a,d they are checking my liver ,kidney ,pang and pancrease. Can cause liver damage, and far I have only a bit liver damage but it is reversal 6verable. I have BOOP. AND LUNG TRANSPLANT IS NEEDED MY LIFE IS MISERABLE HOOK TOO ARM UHH 7TH

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