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Old 07-16-2013, 07:42 PM #1
Roxygirl Roxygirl is offline
Junior Member
 
Join Date: Dec 2012
Posts: 16
10 yr Member
Roxygirl Roxygirl is offline
Junior Member
 
Join Date: Dec 2012
Posts: 16
10 yr Member
Default Connective tissue disease

]I have been working with an immunologist who has been convinced that I have an autoimmune disorder, connective tissue disease but couldn't nail it down. Yesterday she said that was sure that I have Ehlers. Danlos. I have an appointment next week with a genetics clinic at Mt Sinai in NY. The geneticist has lots of experience with connective tissue disorders.

I have had extensive blood work based upon the blood work profile, physical exam and medical history, the immunologist feels that I have EDS and possibly mixed connective tissue disease. I am 57 and have extensive bone spur formation in my neck. My knees aRe bone on bone due to chronic subluxations. My posterior tibial tendon ruptured and I had flat foot reconstruction surgery. Over the past 7 years, I have had several surgeries for bone spur removal, knee stabilization, meniscus repair and carpal tunnel. I have chronically inflamed sinuses leading to reduced lung capacity when I am in flare up mode. I have had chronic post nasal drip since I was a kid despite having numerous negative allergy tests. 8 weeks ago, I had a large pericardial effusion out of the clear blue. I had almost a liter of blood removed. Four days later, blood started to reaccumulate and my upper right chamber began to collapse. I ended up being redrained and had a pericardial window. The biopsied pericardium showed chronic and acute inflammation. Surgical scars heal but there is always a wide scar. The immunologist pointed out that I have minimal cartridge in my ear lobes. The past year, I have been living with brain fog and low energy. I recently started to have occasional Mild tinitus. Blood work shows high inflammatory markers and high compliments as well as low iron saturation. My pulse is elevated and I get winded more easily then normal. My lung capacity is at 83%. The immunology feels that the heart rate , breathlessness and iron may be due to the effusion

My dad was plagued with horrible reflux and severe osteoarthritis.

My 24 year old son has had reflux since he was little. He has keratoconus in both eyes and tons of dark stretch marks on his back and stomach despite being normal weight

I have always thought that my many weird symptoms were related but doctors have always said no up until the immunologist put things together

Does my profile sound like EDS? I am scared that i may have the vascular form.
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