I e-mailed NIH to see if I could find out about the study. Just got one back this morning telling me that they have not yet resumed taking FMD patients ( feel like I just deflated a little bit ) LOL. The waiting list is very long…I had also asked if Dr MC Donnel still wanted questionaire’s etc and was told yes. Don’t know if it’s funding or just backlogged or both… Anyway that’s what I found out in case anyone is interested … Lorraine
Thanks for the information. This makes sense as to why my daughter has not heard back.
Just an update on myself. Was just released from the hospital after four days of tests and obvservations. Late Friday I developed TIA,?Stroke ? symptoms and then went into a full seizure. I was put on Keppra for the seizure symptoms, and I will be seen at the University of Michigan in two days. For those who don’t know me, I have FMD of the veteberals and had my first TIA in April 2007. I am in the NIH study. The doctors in the ER and on the neuro/stroke floor at Borgess Hospital in Kalamazoo are familial with FMD, and I felt I received validation and support. They did the test that Dr. Mc Donnell recommended, and have sent me to the University of Michigan for follow up.
Anne