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Autism, juvenile oligoarticular arthritis, heart defect, kidney stones
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
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@manda304 -- It sounds like you also have fibromyalgia. I'm sorry the Mayo Fibromyalgia classes are too far. I think you are doing great to learn as much as you can about your condition and what will help. Have you thought about finding some information online that would be helpful? I did see one on Medical News Today website that might be helpful for you.
Natural remedies for fibromyalgia
-- https://www.medicalnewstoday.com/articles/315393.php
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1 ReactionI have hypermobilty as ehlers danlos syndrome.You need to find another doctor. Eds also affects your eyes . When I was diagnosed.in 1997 by a specialist there were just a few categories , now about 11. I also have sjogrens, so sjogrens and eds can cause organ failure, separately. I feel your pain, as I have multiple diseases and syndromes. Hypermobility is the only one in the group that isn't tested for genetics. If possible find a new neurologist to be sure of the other diagnoses. A specialist in the ones you have.like autism. My grandson screamed every night for year. But not autism. He is the sweetest boy. Has cp. only in his legs. He just had both legs broken, to have his legs straightened , now learning to walk again, the right way. So just because you scream it doesn't mean autism..I have heard people say the same, screamers then sweet children.
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2 ReactionsI 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
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1 ReactionI 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 diabetes.so 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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