After 4-6 weeks of tiredness, weakness, and then recent progressive pain and swelling in her arms and legs, Ashley has been diagnosed with dermatomyositis. You may or may not know.... its a autoimmune muscle disease that affects the muscles and skin. The cause and how you get it is unknown, but it could be genetic factors, viral muscles infections of muscle or autoimmune mechanisms (according to one source I saw). Luckily it is now treatable and curable. The doctors said about 5 in 1 million get this and it can be difficult to diagnose. We were lucky, they said, in that they were able to diagnose it quickly.
You can read more at:
She was first diagnosed with mono and we thought she had that for a couple of weeks. But once the pain and swelling set in it seemed to be something more. After numerous visits and repeated tests at her doctor (and consults with doctors at Vandy who couldn't diagnose it either) to rule out anything we thought could be even more serious, her doctor then sent her to Vanderbilt Children’s Hospital to the Infectious Disease Center last Thursday. That same day we then found out the first mono test gave a false positive reading; a second, more–detailed test showed her negative for mono. A doctor in his fellowship there, who was substituting for the doctor Ashley was suppose to see, was the only one who had ever seen a person with this disorder and recognized it on Ashley when he saw the redness that appeared on her knuckles and knees. We were lucky he was there to see her that day and know God put him there to see her. Vanderbilt said we are very lucky to have found this diagnosis so quickly. Given the symptoms of the disorder it can take months and months of tests to rule out what it could be before you finally get to dermatomyositis.
No comments:
Post a Comment