Tuesday, May 4, 2010


Dudley Went To See His Neurologist Today ...

for a follow up appointment. He is making progress for Dudley to have a test done to see if he has Pompe disease. Hopefully this will get done in the next few weeks. Dudley will be giving a blood sample which will be sent overnight to Duke University Medical School to conduct the DNA and other tests. Hopefully Dudley has this disease because it is the only form of Muscular Dystrophy for which there is a treatment. The IV drugs are very expensive around $300,000.00 per year. My neurologist said he has one other patient with a confirmed case of Pompe disease, he is the same age as Dudley and he is receiving the treatment. The doctor said it took him over one year to get the Insurance Company to approve this. This doctor also has a law degree and if anyone can get this approved I am sure he can. The doctor has told Dudley that if he is confirmed to have Pompe disease, the drug will stop the progression in it's tracks. Dudley knows it is a long shot but hopefully this is the disease Dudley has been dealing with all of these years. If so, maybe Dudley can get the treatment and hopefully stop this disease from getting any worse.

Seems strange to say "I hope you have this disease" but there it is! Good luck to you.
Thanks Joated, hopefully I will find out one of these days.

I hope and pray for the best for you JDP. :)
Thanks Marian!

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