Cleveland Rocks!

We are home from our trip to Cleveland, and what a good trip it was! The weather cooperated (most of the time) and we learned so much from Dr. Cohen. He really seems to know what is going on in the world of mito. and, as my mom put it, "He's a straight shooter." He ordered a few labs, a sleep study (he couldn't believe no one had done that yet!) and a swallowing study. He answered all of our questions, and gave us lots of good info. Here are some of the highlights:

• He doesn't know what type of mito. it is (quote "The pathophysiology of this disorder is not clear, it is something that could have a mitochondrial basis but that is difficult to prove using our current technology."), but says the chance of our kids having it is "nearly none" since he's pretty sure it was triggered by an event (i.e. a virus)
• He thinks at some point I can probably get back to 95% functioning; not fully where I was before, but that's pretty close! We'll take it!
• Patients with Ehler-Danlos (like me) will exert a lot more energy for every movement, so even before I was "sick" my body had to work twice as hard as everyone else's
• Excerise is critical, as "exercise is the most potent stimulant of mitochondrial function"
• The plan is to try a blue tight therapy, add 3 new supplements, increase fluid to at least 96 oz. day (holy moly!), and wait for the results of the labs and studies.

All in all, we were very pleased with our visit and will see him again in 2-3 months. He will no longer be at the Cleveland Clinic, as he is creating a program from the ground up at a children's hospital (still in OH). He won't be able to see many follow-up patients, or many adult patients, but he is keeping me as he "finds my case very fascinating!" YES! Finally being unusual is to my advantage! Thank you for your continued prayers and support. We are so thankful to be heading in the right direction and to have found Dr. Cohen. He is officially on my "Top 5 Favorite Drs." list (sad that I have one, right?). :-)