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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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Hello @samigrace08,
I see that you have posted your symptoms in multiple discussions and have not found any answers or suggestions. None of us here on Connect are able to give medical advice. We can share our health conditions and what works as a treatment for us if they are similar to your symptoms. I don't think you have mentioned in any of the discussions you started if you have discussed your symptoms or any possible treatments to help you with your doctors.
Have you thought about getting a second opinion or seeing a specialist to help you?
I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:
Mayo Clinic Contact Information: https://www.mayoclinic.org/appointments
John
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1 ReactionI 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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1 ReactionBoy, that’s a lot to deal with ..... I would trust your rheumatologist unless, as someone else noted above you feel it would be good to get a second opinion. Sometimes it makes a world of difference to get a different perspective, although you may be tired of visiting doctors. I know that with pain when it is so constant, sometimes it’s easy to get discouraged. I can only address the joint pain & what has helped me, and that is Celebrex. However I know that there new research that indicated some concern about people taking it who have a heart condition. it sounds like you might fall in that category. Have you been to see any doctors at Mayo? I think they are amazing and can give you answers relatively quickly compared to going from one doctor to the next and waiting for results from each.
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4 Reactions@samigrace08 Since your seeing so many different Dr,s just make sure your on Dr is aware of all the meds there could be some interactions there .Wishing you luck
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3 Reactions@samigrace08 You may want to explore if your diet is contributing to inflammation and flare ups. I have multiple food allergies and gluten issues. I know for a lot of people with arthritis, the nightshade family causes inflammation (peppers, tomatoes, eggplant). Sugar and processed carbs also cause inflammation. I will have joint pain if I eat things that my body reacts to. You may want to consult a nutritionist or a specialist about food allergies since the wrong foods can contribute to disease. You can also do an elimination diet to test yourself and find out if foods are bothering you.
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3 Reactions@samigrace08 Its a good idea to keep a food journal
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2 ReactionsBah Humbug! LOL Actually a diary of everything we do helps in the long run.
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1 ReactionHi @samigrace08 I also was diagnosed with Bicuspid aortic valve and have had arthritis in a lot of my joints and bulging discs. I did find out my hip is mildly deformed due to developmental deformity. I am now 34 and still have days where my knees are so bad I can’t bend them (one at a time) It is strange you mention Hypermobility because I do as well as hypereflexes. I have never been checked for Ehlers but seen Bicuspid aortic valve can be linked to connective tissue disorders? My main problem is muscles being weak from having to pick up the slack from joints. I now take it easy as much as possible but also take gabapenton and cyclobezaprine.
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2 ReactionsHi @manda304, Welcome to Connect. Thank you for sharing. You mentioned your main problem is muscles being weak from having to pick up the slack from joints. I thought you may be interested in the following articles.
What causes muscle weakness?
-- https://www.medicalnewstoday.com/articles/325876.php
There does seem to be a link between Bicuspid Aortic Valve and connective tissue disorders according to the Marfan Foundation
-- https://www.marfan.org/bicuspid-aortic-valve
Has your doctor given you any suggestions for treatments?
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1 Reaction@johnbishop I had physical therapy after both pregnancies and it didn’t help much. So far mayo has said fibromyalgia but I live out of town so it’s a lot to go back and forth for the classes etc. I do take muscle relaxers which help temporarily I do need to just get in shape but always drained (work full time and two small children) I also did have low vitamin d and got levels up after about a year of high doses. I also was diagnosed with hypersomnia/possibly narcolepsy (didn’t stop taking medicine for test so they couldn’t diagnose) my circulation is pretty poor too I’m very pale with bright veins and feet and hands go numb or turn purple quickly but they checked for cad and I don’t have plaques around heart. I do have non specific white matter lesions on frontal lobes (small vessel disease) which could be migraines too?? I will have to look at the link you sent. Just does seem like it is all related and really wanted to be able to just stop the degenerative of everything if I could
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