Myositis Community
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We have an appointment with a Rheumatoid specialist in Nashville TN at Vanderbuilt. My issue is the fact that his Doctor has done all kinds of blood work to check for JM. He suspects JM because a lot of my son's symptoms mirror the symptoms of the Doctors own daughter, who died from JM. This all started after a tonsillectomy when he was 3 year old. He came to me and said " my heat beeps funny" we told his Pediatrician  and he was referred to a cardiologist. We began to notice the palpitations seemed to be accompanied a fever. She examined him and done a lot of test, and said his heart was fine, but his Blood pressure is high. She also stated that according to his records his BP had been running high for a while. He began passing out and becoming very fatigue around age 4 1/2, and the Cardiologist saw him again. She ordered a stress test and my son couldn't complete the test ( he got too tired ). the Cardiologist still insisted his heart was fine but it was abnormal for a child to get tired that fast. She later gave another stress test and he couldn't go as far as the previous test. She referred him to Neurologist, and they couldn't find anything. by age 7, along with the chest pains, heart palpitations, fatigue, and syncope, he began having extreme pain in his neck, arms, hands, back and legs, that were accompanied with migraines. By age 7 1/2 his joints began to swell, and looked red, and were hot to touch (at times). By age 8, he started having problems with chewing and swallowing food, because of pain ( this is also about the time the red rash began to appear on his cheeks). His frequent fevers have been present since we first noticed them, but his blood work is often, but not always, fine ( no abnormal WBC) We can't remember when we noticed, but his hands are always in a fist position, and he can't coordinate his fingers to tie his shoes. Attached is a picture of the rash on his face. Notice how it spreads from his jaw, across his cheeks, and up the bridge of his nose. it also has small bumps. It looks like my "lupus butterfly" I get. The doctors suspect I developed lupus while pregnant with my child.
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