Cleveland Clinic Visit 2

I wish we had something definitive to report. On our second visit with the specialized neurologist, we got a deeper look at Mitchell's 3 brain MRIs. The more thorough explanation was somewhat telling, but still not diagnostic. Where we are big picture is that the doctor identified 5 possible causes for Mitchell's situation, adding that in 50% of the cases a reason remains unknown. Blood and urine tests were done at the Clinic on Wednesday and we're to have results in 6-8 weeks. In the meantime, we need to schedule a remaining test - the spinal tap - either in Cincinnati or back in Cleveland based on whether Cincinnati can package up the results in the manner our doctor requires. The spinal tap will uncover whether a neurotransmitter issue is at play. Some of the 5 possible causes have associated treatments, some do not.

Back to the MRI, we learned Mitchell actually has part of his corpus callosum absent rather than it merely being thin. The corpus callosum connects the right and left sides of the body within the brain. There also is evident some atrophy of white matter.

Mitchell's other test results were reviewed and it's not clear to this group that it's likely Mitchell has a mitochondrial disorder after all. The doctor felt that the probable diagnosis was reaching. But he has not rule it out entirely as tests have not totally caught up with all the manifestations out there.

So what now? We decided that if these tests come back normal, we'll take Mitchell for routine visits to the Clinic every 6 months and make the doctor we saw our primary neurologist. He is a specialist among specialists and as he said, he is on the cutting edge of discoveries in Mitchell's area of dysfunction. He'll be more aware of new findings that may apply to M and his recommendations more routine based on his normal patient log. Should we get a diagnosis by these tests, we will likely feel just as comfortable remaining with our Cincinnati neurologist.

(Bio of doc: http://my.clevelandclinic.org/staff_directory/6/staff_5900.aspx)

Emotionally, another roller coaster. But we are so glad we made this investment of time! We also felt very connected to others while there and know so many of you were praying for our family. Thank you for joining us in getting this quasi-medical education!

When I have more time I'll post about the fun with my brother's family we had between the appointment days and share pictures too!