Sunday, October 20, 2013
For the last five years my 27 years old daughter has had an undiagnosed condition that at random times causes her to develop huge knots. She never knows when it will happen or where they will appear. They have come up in the top of her head, on her face, on her arms, and on the soles of her feet. These knots are extremely painful to her, and have caused her to wind up in the emergency room numerous times. The ER doctors do not know what causes it and only send her home with something for pain. The last time she went to the ER, I made sure that she went to one in a town about 40 miles from where she lives because I had heard good things about it. The doctor in this ER was really kind and took the time to listen to her. He told her that he had never seen anything like the knots that were on the back of her head and above her eye at that time. He told her that he thought that they might be related to Lupus or rheumatoid arthritis. He said that ERs do not test for these conditions because the tests have to be sent out and can takes weeks to come back. He suggested that she go to Emery Hospital because they deal with rare conditions, and she would have a better chance of getting an accurate diagnosis. However, my daughter no longer has insurance.
She managed to get into a community clinic program where payments are based on your income. When she was being screened for the program, the doctor that was interviewing her said that on her first regular appointment she wanted to run tests for lupus, rheumatoid arthritis, diabetes, and thyroid. So, when she went for her first appointment last week she expected this to happen. However, she was placed with a different doctor. This doctor told her that she did not need to worry about lupus that she needed to worry about her weight. He said that her obesity was going to kill her before anything else. He said that if she had lupus the knots would not come and go, that they would always be there. He told her that she probably was having an allergic reaction to something and that the pain was all in her head. My daughter started getting really upset, crying and shaking. However, she insisted he do the tests. He reluctantly agreed and finally ordered a full workup.
My daughter had posted pictures of the knots on her facebook page and an old friend from school saw them. This old friend was diagnosed with lupus while she was in elementary school. She told my daughter that she remembered getting those painful knots before she was diagnosed and started receiving treatment. She also saw a rash on my daughter's face that she said was a butterfly rash that only people with lupus get. This girl had already told my daughter all of this before she went to see the quack that was so obsessed with her weight. This girl told her also that she wound up seeing multiple doctors before she got an accurate diagnosis. In fact, it took so long that lupus had already affected her kidneys. She has to get chemo ever so often due to the damage to her kidneys.
When my daughter called this friend and told her about all that the doctor had said, she was livid. She told my daughter that she will go to the follow up appointment with her and every appointment after that until something is done.
As of now, my daughter is waiting for the test results to come back. Please wish her lots of luck!!!