Dudleys Diary

over in Arlington. Dudley went into the office a little perturbed as the doctor has been telling Dudley for an entire year that he is going to refer him for DNA (genetic testing) to see if he may be suffering from Pompe disease. Dudley asked the doctor why this has not been set up and completed by now. Dudley tried to pin him down but it is hard to get a straight answer. There is a new drug that has been proven to stop the progression of this disease in it's tracks. He did say that the FDA has stopped any further use of the drug until at least the end of the year. He said the drug is approved and used in Europe. I tried to pin the doctor down as to his guess as to my having this disease as opposed to the other forty something kinds of muscular dystrophy's. He said that given my history there is a good chance I have this disease. I reminded the doctor that given the rate I am losing my mobility, time is a critical concern. He assured me he understands and will try to get this set up. The testing is going to cost in excess of $5000.00 and I do not know if it will be covered by insurance and MDA or possibly just MDA. He made a follow up appointment for three months this time instead of the usual six months. Hopefully I will hear something before then. I told him I have been having a lot of problems with my allergies and congestion which is making it difficult to breath properly at night. He is going to get me a heated humidifier for my breathing machine and he is also referring me to an allergy doctor. The doctor plugged the smart card out of my breathing machine into his computer and looked at the results and said it looked like the machine was doing its job. I told him it must be as I am still here.